Major Birth Defects Data from Population-based Birth Defects … · 2012. 12. 22. · Birth Defects...

Major Birth Defects Data from Population-based Birth Defects Surveillance Programs in the

United States, 2005-2009

Updated September 2012

Prepared by the National Center on Birth Defects and Developmental Disabilities, Centers for Disease

Control and Prevention

This report contains data from 41 population-based birth defects programs. These include: Alaska Birth

Defects Registry; Arkansas Reproductive Health Monitoring System; Arizona Birth Defects Monitoring

Program; California Birth Defects Monitoring Program; Colorado Responds To Children With Special

Needs; Connecticut Birth Defects Registry; Delaware Birth Defects Surveillance Project; Florida Birth

Defects Registry; Metropolitan Atlanta Congenital Defects Program; Hawaii Birth Defects Program;

Iowa Registry For Congenital and Inherited Disorders; Illinois Adverse Pregnancy Outcomes Reporting

System; Indiana Birth Defects & Problems Registry; Kentucky Birth Surveillance Registry; Louisiana

Birth Defects Monitoring Network; Massachusetts Center For Birth Defects Research And Prevention;

Maryland Birth Defects Reporting and Information System; Maine Birth Defects Program; Michigan

Birth Defects Registry; Minnesota Birth Defects Information System; Mississippi Birth Defects

Registry; Missouri Birth Defects Surveillance System; North Carolina Birth Defects Monitoring

Program; North Dakota Birth Defects Monitoring System; Nebraska Birth Defects Registry; New

Hampshire Birth Conditions Program; New Jersey Special Child Health Services Registry; Nevada Birth

Outcomes Monitoring System; New York State Congenital Malformations Registry; Ohio Connections

For Children With Special Needs; Oklahoma Birth Defects Registry; Puerto Rico Birth Defects

Surveillance and Prevention System; Rhode Island Birth Defects Program; South Carolina Birth Defects

Program; Tennessee Birth Defects Registry; Texas Birth Defects Epidemiology and Surveillance

Branch; Utah Birth Defect Network; Virginia Congenital Anomalies Reporting And Education System;

Wisconsin Birth Defects Registry; West Virginia Congenital Abnormalities Registry, Education And

Surveillance System; and the United States Department of Defense Birth and Infant Health Registry

Additional information and program contacts on population-based birth defects surveillance programs

are available on page S121.

STATE BIRTH DEFECTS SURVEILLANCE PROGRAM DATA S1

Birth Defects Research (Part A) 94:S1-S169 (2012)

AlaskaBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)AlaskaBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)

Maternal Race/Ethnicity

DefectNon-Hispanic White

Non-Hispanic Blackor African Hispanic

Asian or PacificIslander

AmericanIndian orAlaskan Native Total** Notes

Anencephalus <6.

.

...

.

.<6.

<6.

Aniridia 00.0

.

...

.

.<6.

<6.

Anophthalmia/microphthalmia 61.8

.

...

.

.75.0

152.7

Anotia/microtia 92.7

.

...

.

.85.7

183.3

Aortic valve stenosis <6.

.

...

.

.00.0

<6.

Atrial septal defect 401119.9

.

...

.

.315224.9

814148.6

Atrioventricular septal defect(endocardial cushion defect)

185.4

.

...

.

.128.6

346.2

Biliary atresia <6.

.

...

.

.128.6

162.9

Bladder exstrophy <6.

.

...

.

.<6.

61.1

Choanal atresia 72.1

.

...

.

.<6.

122.2

Cleft lip with and without cleft palate 5115.3

.

...

.

.5539.3

11821.5

Cleft palate without cleft lip 236.9

.

...

.

.5237.1

8415.3

Coarctation of aorta 185.4

.

...

.

.64.3

254.6

Common truncus 72.1

.

...

.

.<6.

122.2

Congenital cataract 113.3

.

...

.

.1611.4

305.5

Congenital hip dislocation 6720.0

.

...

.

.2920.7

10619.3

Diaphragmatic hernia 113.3

.

...

.

.2115.0

366.6

Down syndrome (Trisomy 21) 4312.9

.

...

.

.3021.4

8715.9

Ebstein anomaly <6.

.

...

.

.<6.

<6.

Encephalocele 103.0

.

...

.

.139.3

244.4

Epispadias <6.

.

...

.

.<6.

61.1

Esophageal atresia/tracheoesophagealfistula

92.7

.

...

.

.64.3

162.9

Hirschsprung disease (congenitalmegacolon)

195.7

.

...

.

.128.6

366.6

Hydrocephalus without spina bifida 278.1

.

...

.

.1913.6

5910.8

Hypoplastic left heart syndrome 103.0

.

...

.

.<6.

142.6

Hypospadias* 203128.9

.

...

.

.4562.1

297129.1

Microcephalus 5315.9

.

...

.

.4532.1

10719.5

Obstructive genitourinary defect 19157.1

.

...

.

.6244.3

28451.8

Patent ductus arteriosus 26579.3

.

...

.

.168119.9

50692.3

1

Pulmonary valve atresia and stenosis 3811.4

.

...

.

.3625.7

8014.6

Pyloric stenosis 6820.3

.

...

.

.6546.4

14326.1

Rectal and large intestinal atresia/stenosis 298.7

.

...

.

.1913.6

529.5



AlaskaBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)






Reduction deformity, lower limbs 267.8

.

...

.

.1712.1

498.9

Reduction deformity, upper limbs 113.3

.

...

.

.85.7

244.4

Renal agenesis/hypoplasia 288.4

.

...

.

.85.7

448.0

Spina bifida without anencephalus 185.4

.

...

.

.1611.4

356.4

Tetralogy of Fallot 133.9

.

...

.

.1410.0

305.5

Total anomalous pulmonary venous return(TAPVR)

<6.

.

...

.

.<6.

112.0

Transposition of great arteries - All 123.6

.

...

.

.117.9

244.4

Tricuspid valve atresia and stenosis 61.8

.

...

.

.<6.

91.6

Trisomy 13 (Patau syndrome) 61.8

.

...

.

.<6.

81.5

Trisomy 18 (Edwards syndrome) <6.

.

...

.

.<6.

122.2

Ventricular septal defect 24673.6

.

...

.

.270192.7

559102.0

2

Total Live Births 33432.

.

...

.

.14009.

54796.

Total Male Live Births 15754.

.

...

.

.7244.

22998.

*Hypospadias: prevalence per 10,000 male live births**Total includes unknown race



AlaskaTrisomy Counts and Prevalence by Maternal Age 2005-2009 (Prevalence per 10,000 Live Births)AlaskaTrisomy Counts and Prevalence by Maternal Age 2005-2009 (Prevalence per 10,000 Live Births)

Age

Defect Less than 35 35 and greater Total** NotesDown syndrome (Trisomy 21) 51

13.73652.5

8715.9

Trisomy 13 (Patau syndrome) <6.

<6.

81.5

Trisomy 18 (Edwards syndrome) <6.

<6.

122.2


6859.

54796.

**Total includes unknown maternal age

Notes1.Patent ductus arteriosus - only birth weight =>2500 grams Infants.2.Ventricular septal defect - The ABDR is a passive surevillance system. Reports are not submitted as 'probable'. The ABDR does not conduct caseverification on these reports.

General comments-Alaska conducts surveillance for FAS using FASSNET methodology. Contact the program for data on FAS and FASD.-Cases matched to Alaska birth certificates only; birth cohort 2002-2006 for major anomalies only-Data was indicated by race for non-hispanic White and non-hispanic AK Native only. Live birth numbers were queried from VS data sets and not frompublished VS data as VS does not publish break downs on these two races with indicated ethnicity.-The ABDR does not collect data on still births or terminations; live birth information only.-The ABDR does not collect or provide infomation on amniotic bands.-The ABDR does not provide data to any other state agency for the purpose of further metabolic and/or medical testing.-The ABDR does not provide numbers for cells with <6 cases.-The Alaska Birth Defects Registry collected data during all years of this birth cohort-The Alaska Birth Defects Registry does not provide data on individual years within the birth cohort. Only Totals by Race and Age are presented withindividual year data-The Alaska Birth Defects Registry uses the ICD-9 coding system.



ArizonaBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)ArizonaBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)






Anencephalus 211.0

42.1

411.9

10.7

41.3

731.5

Aniridia 10.0

00.0

20.1

00.0

00.0

30.1


10.5

281.3

10.7

20.6

440.9


00.0

371.7

32.0

103.2

651.3

Aortic valve stenosis 371.8

21.1

422.0

21.3

61.9

891.8

Biliary atresia 20.1

21.1

60.3

00.0

20.6

120.2

Bladder exstrophy 30.1

00.0

60.3

00.0

00.0

90.2


10.5

170.8

00.0

20.6

420.9


137.0

23911.1

1610.5

7223.3

54911.2


73.8

1486.9

149.2

206.5

3106.3


42.1

904.2

63.9

123.9

2254.6

Common truncus 110.5

10.5

110.5

10.7

10.3

260.5


10.5

190.9

00.0

31.0

330.7


31.6

442.0

21.3

113.6

1002.0


189.7

28013.0

1610.5

3712.0

60812.4

Ebstein anomaly 150.7

00.0

130.6

21.3

51.6

360.7

Encephalocele 100.5

21.1

170.8

21.3

31.0

340.7


432.1

21.1

411.9

00.0

61.9

921.9

Gastroschisis 914.4

52.7

1326.1

32.0

258.1

2655.4


311.5

63.2

231.1

10.7

10.3

641.3


63.2

512.4

32.0

92.9

1362.8

Omphalocele 331.6

31.6

371.7

63.9

31.0

841.7


63.2

1155.3

63.9

185.8

2304.7

Pulmonary valve atresia 361.8

42.1

502.3

32.0

113.6

1072.2


73.8

251.2

10.7

31.0

471.0


52.7

562.6

21.3

103.2

1112.3


73.8

813.8

42.6

113.6

1733.5


73.8

974.5

53.3

196.1

2124.3


52.7

422.0

32.0

20.6

1082.2

dextro-Transposition of great arteries(d-TGA)

502.4

52.7

341.6

32.0

20.6

972.0


42.1

261.2

53.3

31.0

541.1



ArizonaBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)






Trisomy 18 (Edwards syndrome) 371.8

42.1

401.9

53.3

103.2

972.0


18626.

214999.

15253.

30914.

491930.

**Total includes unknown race



ArizonaTrisomy Counts and Prevalence by Maternal Age 2005-2009 (Prevalence per 10,000 Live Births)ArizonaTrisomy Counts and Prevalence by Maternal Age 2005-2009 (Prevalence per 10,000 Live Births)

Age


7.926843.3

60812.4


121.9

541.1


335.3

972.0


61931.

491930.


General comments-In this data submission, ABDMP adhered to the requested race/Hispanic categories. However, for traditional in-state reports ABDMP categorizes Whitesas Hispanic or non-Hispanic, and for other races (i.e. Black, Asian, and American Indian) retains the single race code regardless of their Hispanicdesignation.



ArkansasBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)ArkansasBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)






Amniotic bands 261.9

112.8

10.5

12.4

00.0

391.9

Anencephalus 463.4

61.5

115.1

00.0

00.0

633.1

Aniridia 20.1

10.3

10.5

00.0

00.0

40.2


71.8

31.4

00.0

218.0

371.8


30.8

157.0

12.4

00.0

412.0


51.3

31.4

00.0

00.0

552.7


9323.9

5224.3

1433.1

544.9

56528.0


926.8

246.2

94.2

24.7

00.0

1276.3


51.3

00.0

00.0

00.0

100.5


00.0

00.0

00.0

00.0

40.2


30.8

00.0

00.0

19.0

120.6


318.0

198.9

24.7

00.0

22511.2


205.1

115.1

12.4

19.0

1417.0


205.1

83.7

12.4

00.0

1316.5

Common truncus 90.7

30.8

20.9

12.4

00.0

150.7


164.1

73.3

12.4

19.0

773.8


30.8

31.4

12.4

00.0

241.2


82.1

62.8

00.0

00.0

613.0


276.9

3918.2

614.2

00.0

24212.0


20.5

31.4

00.0

19.0

140.7

Encephalocele 151.1

92.3

41.9

12.4

00.0

291.4

Epispadias 100.7

10.3

10.5

00.0

00.0

120.6


423.1

61.5

52.3

37.1

00.0

562.8

Fetus or newborn affected by maternalalcohol use

00.0

00.0

00.0

00.0

00.0

00.0

Gastroschisis 916.7

143.6

83.7

12.4

218.0

1165.7


413.0

112.8

20.9

12.4

00.0

552.7


215.4

125.6

24.7

00.0

1045.2


133.3

20.9

00.0

19.0

703.5


13166.6

2926.8

732.3

590.4

80277.7

Microcephalus 221.6

123.1

62.8

49.5

19.0

452.2


6316.2

4621.5

511.8

19.0

36818.2

Omphalocele 292.1

164.1

31.4

00.0

00.0

482.4



ArkansasBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)







266.7

157.0

37.1

327.0

1356.7


5614.4

2411.2

921.3

19.0

27613.7


30.8

10.5

12.4

00.0

140.7


348.7

6028.0

24.7

327.0

36818.2


287.2

2511.7

614.2

19.0

1557.7


164.1

41.9

00.0

00.0

572.8


153.9

125.6

49.5

00.0

924.6


123.1

83.7

00.0

00.0

472.3


61.5

136.1

00.0

00.0

914.5


153.9

73.3

12.4

00.0

874.3


131.0

51.3

20.9

12.4

19.0

221.1


112.8

62.8

12.4

00.0

844.2


604.4

102.6

52.3

12.4

00.0

763.8

Tricuspid valve atresia 60.4

30.8

41.9

00.0

00.0

130.6


41.0

20.9

00.0

00.0

201.0


143.6

10.5

00.0

00.0

522.6


15840.6

15974.2

2559.1

544.9

120359.6


38898.

21430.

4228.

1113.

201763.


19684.

10822.

2166.

553.

103282.




ArkansasTrisomy Counts and Prevalence by Maternal Age 2005-2009 (Prevalence per 10,000 Live Births)ArkansasTrisomy Counts and Prevalence by Maternal Age 2005-2009 (Prevalence per 10,000 Live Births)

Age


7.69963.5

24212.0


63.8

201.0


2214.1

522.6


15602.

201763.


General comments-Stillborns include fetal losses at any gestational age and subjects where outcome is unknown.



CaliforniaBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)CaliforniaBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)





AmericanIndian orAlaskan Native Total*** Notes


*.

241.1

*.

*.

471.4

Anencephalus 131.4

*.

532.5

*.

00.0

982.8


*.

170.8

*.

00.0

270.8


*.

874.1

95.6

*.

1153.3


*.

412.0

*.

*.

682.0


2817.9

35116.7

2817.5

519.1

55015.9

1


455.0

149.0

914.3

85.0

*.

1664.8


00.0

80.4

*.

*.

180.5

Bladder exstrophy *.

00.0

*.

00.0

00.0

50.1

Choanal atresia *.

00.0

*.

00.0

00.0

80.2


*.

21510.3

2012.5

*.

35010.1


*.

1085.1

95.6

*.

1694.9

2


85.1

944.5

*.

*.

1684.9

Common truncus *.

*.

70.3

00.0

00.0

100.3


*.

190.9

*.

00.0

361.0


*.

512.4

*.

*.

862.5


1912.2

31314.9

*.

*.

48814.1


00.0

130.6

*.

00.0

240.7

Encephalocele *.

*.

201.0

*.

*.

320.9


121.3

*.

291.4

*.

*.

481.4

3


*.

00.0

*.

*.

00.0

*.

Gastroschisis 465.1

63.8

1155.5

148.8

00.0

1875.4


74.5

663.1

*.

*.

1103.2


*.

472.2

53.1

*.

812.3

Hypospadias** 6814.7

1113.7

787.3

67.3

*.

1729.7

4

Omphalocele 70.8

*.

261.2

*.

00.0

461.3


95.8

1085.1

159.4

*.

1905.5


*.

813.9

127.5

*.

1424.1

5


*.

251.2

*.

*.

461.3


74.5

592.8

74.4

*.

1043.0


00.0

321.5

53.1

*.

501.4

6


*.

934.4

*.

00.0

1424.1



CaliforniaBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)





AmericanIndian orAlaskan Native Total*** Notes


*.

663.1

53.1

00.0

1023.0


91.0

00.0

351.7

*.

00.0

471.4


212.3

*.

341.6

*.

00.0

611.8


00.0

140.7

*.

*.

250.7


*.

211.0

*.

00.0

431.2


53.2

522.5

*.

*.

1012.9


15616.

209751.

15999.

2614.

345349.


8026.

106684.

8234.

1339.

176557.

*Cell size suppressed to protect confidentiality or to indicate case count <5**Hypospadias: prevalence per 10,000 male live births***Total includes unknown race



CaliforniaTrisomy Counts and Prevalence by Maternal Age 2005-2009 (Prevalence per 10,000 Live Births)CaliforniaTrisomy Counts and Prevalence by Maternal Age 2005-2009 (Prevalence per 10,000 Live Births)

Age

Defect Less than 35 35 and greater Total*** NotesDown syndrome (Trisomy 21) 254

8.322258.7

48814.1


112.9

431.2


4211.1

1012.9


37847.

345349.

***Total includes unknown maternal age

Notes1.ASD: 1) only cases confirmed by physician review or echo or cath or surgery or autopsy are included; 2) if the ASD is a component of another majorheart malformation, it is not counted2.Submucous cleft and bifid uvula are not included in this report.3.Isolated tracheoesophageal fistula is not included in this report.4.Hypospadias case counts include only 2nd and 3rd degree.5.Anal stenosis is not included in this report.6.Unilateral renal agenesis/hypoplasia is not included in this report.

General comments-Cases with chromosomal defects other than trisomy 13, 18 and 21 are not included in this report.-Cases with single gene disorders are not included in this report.-Stillbirth > = 20 wks is included for all defect types.



ColoradoBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)ColoradoBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)






Anencephalus 241.2

00.0

222.0

21.7

14.1

521.5

1

Aniridia 60.3

00.0

00.0

00.0

00.0

60.2


10.7

171.5

00.0

00.0

481.4


63.9

484.4

21.7

00.0

1043.0


32.0

312.8

00.0

14.1

1183.4


211138.3

1107100.7

11397.6

1873.1

339497.2


763.7

85.2

383.5

65.2

14.1

1313.8

2


10.7

100.9

00.0

00.0

341.0


00.0

30.3

00.0

14.1

100.3


53.3

191.7

10.9

14.1

641.8


127.9

14613.3

65.2

520.3

40511.6


106.6

948.6

65.2

416.2

2898.3


117.2

867.8

32.6

14.1

2968.5


00.0

50.5

00.0

00.0

190.5


32.0

222.0

10.9

00.0

712.0


117.2

14913.6

1311.2

312.2

48914.0


63.9

363.3

54.3

00.0

1373.9


2818.4

17115.6

1513.0

14.1

74321.3


00.0

90.8

32.6

00.0

270.8

Encephalocele 140.7

32.0

131.2

10.9

00.0

361.0

Epispadias 271.3

21.3

141.3

00.0

00.0

431.2


904.3

74.6

353.2

32.6

14.1

1384.0

Gastroschisis 743.6

42.6

746.7

21.7

312.2

1624.6

3


552.6

63.9

181.6

21.7

00.0

822.3


1811.8

1049.5

65.2

312.2

2808.0


42.6

272.5

00.0

00.0

902.6


105134.4

39369.7

5593.3

1298.6

2095117.0


1811.8

12010.9

54.3

28.1

2948.4


6341.3

41637.9

5950.9

1144.7

141740.6

Omphalocele 371.8

63.9

211.9

10.9

00.0

792.3

4


8253.8

45141.0

4841.5

1144.7

141440.5

5


2113.8

1089.8

86.9

14.1

3028.7



ColoradoBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)







74.6

302.7

21.7

00.0

762.2


159.8

18817.1

43.5

416.2

48914.0


74.6

807.3

65.2

28.1

2196.3


21.3

111.0

10.9

14.1

551.6


42.6

343.1

10.9

14.1

1073.1


95.9

484.4

21.7

14.1

1935.5


21.3

423.8

21.7

14.1

1213.5

6


95.9

423.8

97.8

00.0

1464.2


150.7

10.7

211.9

21.7

00.0

411.2


63.9

343.1

32.6

14.1

1073.1


391.9

32.0

171.5

21.7

00.0

641.8


53.3

222.0

21.7

00.0

561.6

7


10.7

60.5

00.0

28.1

942.7


32.0

292.6

32.6

00.0

1634.7


7549.2

54349.4

3933.7

1040.6

161446.2

8


15254.

109893.

11580.

2463.

349062.


7810.

56394.

5896.

1217.

179134.




ColoradoTrisomy Counts and Prevalence by Maternal Age 2005-2009 (Prevalence per 10,000 Live Births)ColoradoTrisomy Counts and Prevalence by Maternal Age 2005-2009 (Prevalence per 10,000 Live Births)

Age


10.239572.1

74321.3


458.2

942.7


7814.2

1634.7


54818.

349062.


Notes1.Anencephalus: live births and fetal deaths any gestational age2.Atrioventricular septal defect:Cannot include Inlet VSD3.Gastroschisis: medical record review4.Omphalocele: medical record review5.Patent ductus arteriosus: birth weight greater than or equal to 2500 grams6.Spina bifidia without anencephalus: live birth and fetal deaths any gestational age7.Tricuspid valve atresia and stenosis:Tricuspid stenosis and hypoplasia included8.Ventricular septal defects: includes probable cases

General comments-Contact State Program directly in regards to fetal alcohol syndrome-CDPHE disclaims responsibility for any analysis, interpretations, or conclusions



ConnecticutBirth Defects Counts and Prevalence 2005-2008 (Prevalence per 10,000 Live Births)ConnecticutBirth Defects Counts and Prevalence 2005-2008 (Prevalence per 10,000 Live Births)






Amniotic bands 10.1

00.0

00.0

00.0

00.0

10.1

Anencephalus 272.7

31.5

51.5

11.1

00.0

362.2


10.5

41.2

00.0

00.0

70.4


10.5

41.2

00.0

00.0

130.8


00.0

20.6

00.0

00.0

90.5


14472.5

17250.7

4752.5

00.0

83750.6


333.3

94.5

92.7

22.2

00.0

533.2


42.0

41.2

22.2

00.0

140.8


10.5

30.9

00.0

00.0

70.4


31.5

72.1

11.1

00.0

261.6


157.5

308.8

55.6

00.0

1156.9


63.0

144.1

66.7

00.0

825.0


94.5

195.6

22.2

00.0

714.3

Common truncus 40.4

10.5

00.0

22.2

00.0

70.4


31.5

72.1

22.2

00.0

191.1


73.5

308.8

88.9

00.0

1287.7


63.0

113.2

33.4

00.0

462.8


2814.1

4011.8

66.7

00.0

22213.4


21.0

61.8

00.0

00.0

130.8

Encephalocele 60.6

00.0

72.1

00.0

00.0

130.8

Epispadias 60.6

42.0

123.5

22.2

00.0

241.5


323.2

52.5

82.4

22.2

00.0

472.8


121.2

73.5

41.2

00.0

00.0

251.5

Gastroschisis 565.7

126.0

298.6

33.4

00.0

1016.1


222.2

115.5

113.2

22.2

00.0

482.9


168.1

226.5

33.4

00.0

855.1


31.5

113.2

00.0

00.0

301.8


6462.8

7543.1

2656.6

00.0

59169.8

Microcephalus 292.9

168.1

195.6

22.2

00.0

664.0


52.5

133.8

44.5

00.0

513.1

Omphalocele 90.9

00.0

41.2

00.0

00.0

130.8


12361.9

15345.1

4145.8

00.0

70442.5



ConnecticutBirth Defects Counts and Prevalence 2005-2008 (Prevalence per 10,000 Live Births)







2110.6

267.7

11.1

00.0

1096.6


3316.6

12837.8

1213.4

00.0

41124.8


94.5

154.4

11.1

00.0

553.3


31.5

30.9

22.2

00.0

211.3


42.0

51.5

22.2

00.0

321.9


73.5

226.5

22.2

00.0

845.1


21.0

72.1

11.1

00.0

271.6


115.5

216.2

55.6

00.0

955.7


73.5

216.2

44.5

00.0

724.4


00.0

20.6

00.0

00.0

90.5


21.0

20.6

00.0

00.0

90.5


21.0

30.9

22.2

00.0

140.8


10251.3

13640.1

8594.9

224.7

80648.7


19871.

33905.

8953.

811.

165496.


10184.

17414.

4590.

432.

84665.




ConnecticutTrisomy Counts and Prevalence by Maternal Age 2005-2008 (Prevalence per 10,000 Live Births)ConnecticutTrisomy Counts and Prevalence by Maternal Age 2005-2008 (Prevalence per 10,000 Live Births)

Age


8.511031.2

22213.4


51.4

90.5


51.4

140.8


35240.

165496.


General comments-Coding system used is ICD-9



DelawareBirth Defects Counts and Prevalence 2007-2008 (Prevalence per 10,000 Live Births)DelawareBirth Defects Counts and Prevalence 2007-2008 (Prevalence per 10,000 Live Births)






Amniotic bands 10.8

23.1

12.7

00.0

00.0

41.6

Anencephalus 10.8

11.6

12.7

00.0

00.0

41.6

Aniridia 10.8

00.0

12.7

00.0

00.0

20.8


00.0

00.0

19.5

00.0

10.4


11.6

616.0

00.0

00.0

104.1


00.0

00.0

19.5

00.0

62.5

1


1320.2

1026.7

00.0

00.0

5422.3

2


86.2

34.7

25.3

00.0

00.0

135.4


00.0

00.0

00.0

00.0

10.4


00.0

00.0

00.0

00.0

00.0


00.0

00.0

00.0

00.0

10.4


34.7

38.0

19.5

00.0

177.0


34.7

410.7

218.9

00.0

208.2

3


23.1

00.0

00.0

00.0

41.6

Common truncus 00.0

00.0

00.0

00.0

00.0

00.0


00.0

25.3

19.5

00.0

72.9


46.2

718.7

218.9

00.0

6225.6


00.0

12.7

00.0

00.0

31.2


69.3

38.0

218.9

00.0

3213.2


00.0

00.0

00.0

00.0

10.4

Encephalocele 21.5

23.1

00.0

00.0

00.0

41.6

Epispadias 10.8

00.0

00.0

00.0

00.0

20.8


21.5

00.0

12.7

00.0

00.0

31.2


10.8

00.0

00.0

00.0

00.0

10.4

Gastroschisis 118.5

11.6

38.0

00.0

00.0

156.2


10.8

11.6

25.3

00.0

00.0

41.6


11.6

12.7

00.0

00.0

104.1

4


34.7

410.7

00.0

00.0

114.5

Hypospadias* 5177.0

2576.7

526.7

353.2

1625.0

8770.4

Microcephalus 96.9

1015.5

25.3

218.9

1303.0

2510.3

5


3655.9

2772.0

13123.0

00.0

20082.4

6

Omphalocele 10.8

34.7

00.0

00.0

00.0

41.6



DelawareBirth Defects Counts and Prevalence 2007-2008 (Prevalence per 10,000 Live Births)







1218.6

38.0

00.0

00.0

2610.7

7


1218.6

12.7

19.5

00.0

3614.8

8


11.6

12.7

00.0

00.0

31.2

8


23.1

718.7

218.9

00.0

249.9


23.1

00.0

00.0

00.0

124.9


23.1

00.0

00.0

00.0

20.8


00.0

00.0

00.0

00.0

52.1


57.8

25.3

19.5

00.0

166.6


34.7

12.7

00.0

00.0

83.3

9


23.1

25.3

218.9

00.0

156.2

10


10.8

11.6

00.0

00.0

00.0

20.8


11.6

38.0

00.0

00.0

72.9


32.3

11.6

38.0

00.0

00.0

72.9


11.6

00.0

00.0

00.0

10.4


11.6

00.0

00.0

00.0

10.4


23.1

12.7

19.5

00.0

62.5


4163.7

3490.7

218.9

1303.0

17773.0

11


6440.

3749.

1057.

33.

24260.


3260.

1875.

564.

16.

12353.




DelawareTrisomy Counts and Prevalence by Maternal Age 2007-2008 (Prevalence per 10,000 Live Births)DelawareTrisomy Counts and Prevalence by Maternal Age 2007-2008 (Prevalence per 10,000 Live Births)

Age


8.11338.9

3213.2


00.0

10.4


412.0

62.5


3338.

24260.


Notes1.Trivial or limited are not included.2.Atrial septal fenestrations are reported as an atrial septal defect (ASD). ASDs that self-close (not present after a month) are considered Patent ForamenOvales (PFO). PFOs are not counted.3.Pierre Robin sequence defects are included as a cleft palate.4.Benign external hydrocephalus or hydrocephalus due to a secondary cause are not included.5.Head circumference must be less than the 5th percentile.6.All obstructive and non-obstructive genitourinary defects (i.e., all hydronephrosis and other types of kidney dilation) are included as well as all resolveddefects.7.The newborn must weigh 2500 grams or greater and the PDA must be present at one month of age.8.Peripheral, branch, trivial, or limited are not included.9.Spina bifida occulta is not included.10.A ventricular septal defect with an overriding aorta is counted as Tetralogy of Fallot.11.All sizes and types of ventricular septal defects are included and all resolved VSDs are included.

General comments-2007 Maternal Fetal Medicine cases were derived from cytogenetic lists and fetal therapy lists. 2008 Maternal Fetal Medicine cases were derived fromall possible defect cases handled by MFM.-All chromosomal defects require a cytogenetics report.-All defects found prenatally must be confirmed postnatally or through cytogenetic testing.-All heart defects require an echocardiogram report.-Coding System used was CDC/BPA.-Registry does not distinguish spontaneous terminations from elective terminations. Stillbirths, miscarriages, and terminations are all currently reportedtogether.-Registry was not collecting data in 2005 and 2006. Registry data from 2009 is currently being vetted.



FloridaBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)FloridaBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)






Anencephalus 290.6

140.6

80.2

10.3

14.0

590.5

1

Aniridia 30.1

30.1

20.1

00.0

00.0

80.1


331.3

180.5

10.3

00.0

1060.9


70.3

310.9

31.0

14.0

800.7


251.0

341.0

41.3

00.0

1801.6


2074.0

1114.5

1113.3

103.2

00.0

4483.9

2


401.6

280.8

20.6

14.0

1151.0


120.5

70.2

00.0

00.0

360.3


311.3

421.3

31.0

00.0

1701.5


1265.1

2397.2

278.6

14.0

9077.9


1134.6

1655.0

165.1

14.0

6355.5


1355.5

1905.7

123.8

312.1

7596.6


150.6

210.6

20.6

00.0

920.8


381.5

290.9

31.0

00.0

1451.3


1074.4

2888.7

319.9

416.1

9268.0


853.5

792.4

61.9

00.0

3553.1


30712.5

43413.1

3310.5

312.1

149613.0

1


130.5

140.4

20.6

14.0

680.6

Encephalocele 380.7

391.6

331.0

20.6

14.0

1151.0

Epispadias 771.5

200.8

220.7

10.3

00.0

1231.1


1162.3

482.0

702.1

20.6

00.0

2392.1

Gastroschisis 3045.9

722.9

1043.1

72.2

00.0

4914.3

3


1442.8

963.9

631.9

31.0

14.0

3132.7


29512.0

1975.9

237.3

14.0

8507.4


943.8

732.2

51.6

00.0

3513.1


76460.9

78746.3

8955.0

323.3

393566.9


1877.6

1895.7

72.2

312.1

6906.0


67327.4

138241.6

10934.7

624.2

410335.7


33413.6

2888.7

175.4

520.1

118110.3


421.7

391.2

72.2

14.0

1721.5


42317.2

77423.3

185.7

14.0

320627.9


1174.8

1153.5

134.1

00.0

4904.3



FloridaBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)







441.8

451.4

31.0

00.0

1701.5


492.0

521.6

31.0

00.0

2312.0


1014.1

1093.3

92.9

14.0

4614.0


753.1

972.9

20.6

00.0

3292.9

1


1285.2

1263.8

144.5

14.0

5664.9


380.7

251.0

270.8

61.9

00.0

980.9


1194.8

1514.5

82.5

00.0

5514.8


1633.2

401.6

792.4

31.0

00.0

2902.5


291.2

331.0

31.0

00.0

1411.2

2


301.2

240.7

00.0

00.0

1000.9

1


542.2

531.6

41.3

00.0

1891.6

1


126751.5

192357.9

12640.1

936.2

621054.0

2


245888.

331910.

31389.

2483.

1150397.


125364.

170036.

16192.

1289.

588624.




FloridaTrisomy Counts and Prevalence by Maternal Age 2005-2009 (Prevalence per 10,000 Live Births)FloridaTrisomy Counts and Prevalence by Maternal Age 2005-2009 (Prevalence per 10,000 Live Births)

Age


8.071342.5

149613.0

1


291.7

1000.9

1


804.8

1891.6

1


167823.

1150397.


Notes1.FL reports live births only2.Includes probable cases3.Cases of Gastroschisis were differentiated from omphalocele by using 54.71 procedure code

General comments-The Florida Birth Defect Registry is a passive population based surveillance system. In 2008, the data linkage methodology was modified to improve caseascertainment. In 2009, the linking methodology was again modified with the addition of Infant Death Certificate as a data source and the elimination ofthree data sources from the department's Children's Medical Services program. These modifications may affect the observed counts and rates.



GeorgiaBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)GeorgiaBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)






Amniotic bands 81.0

232.2

50.8

21.2

00.0

381.4

Anencephalus 141.7

282.7

213.3

42.4

00.0

742.7

Aniridia 20.2

20.2

10.2

00.0

00.0

70.3


181.7

81.3

31.8

00.0

381.4


151.4

132.1

21.2

00.0

371.4


232.2

71.1

21.2

00.0

542.0


28327.1

16426.1

2716.3

266.0

74927.5


496.1

827.8

274.3

31.8

133.0

1746.4


161.5

20.3

00.0

00.0

230.8


20.2

00.0

00.0

00.0

30.1


111.1

20.3

10.6

00.0

271.0


898.5

6510.3

95.4

6198.0

2579.4


565.4

426.7

42.4

266.0

1525.6


454.3

254.0

31.8

00.0

1344.9


171.6

30.5

21.2

00.0

351.3


111.1

81.3

10.6

00.0

361.3


212.0

467.3

31.8

133.0

1736.4


201.9

254.0

21.2

133.0

813.0


14614.0

10917.4

1810.9

133.0

45616.7


40.4

91.4

00.0

00.0

220.8

Encephalocele 00.0

181.7

30.5

53.0

133.0

301.1

Epispadias 40.5

50.5

10.2

00.0

00.0

100.4


263.2

201.9

101.6

00.0

00.0

572.1


40.5

60.6

10.2

00.0

00.0

110.4

Gastroschisis 283.5

514.9

325.1

53.0

00.0

1224.5


131.6

383.6

30.5

00.0

133.0

552.0


11410.9

416.5

127.2

4132.0

2649.7


181.7

111.8

21.2

00.0

511.9


30657.0

6921.2

2124.1

2120.5

78355.7

Microcephalus 283.5

787.5

274.3

21.2

133.0

1435.3


33431.9

24839.5

3219.3

12396.0

109840.3

Omphalocele 162.0

343.3

142.2

10.6

00.0

722.6



GeorgiaBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)







25524.4

18729.8

2213.3

7231.0

76828.2

1


858.1

396.2

127.2

133.0

1957.2


232.2

121.9

31.8

00.0

501.8


646.1

11117.7

84.8

00.0

33912.5


363.4

355.6

84.8

00.0

1114.1


222.1

121.9

00.0

00.0

521.9


323.1

142.2

10.6

00.0

692.5


494.7

264.1

21.2

133.0

1355.0


383.6

284.5

31.8

00.0

1154.2


504.8

152.4

74.2

00.0

1174.3


70.9

90.9

101.6

21.2

00.0

291.1


323.1

152.4

42.4

00.0

823.0


263.2

262.5

121.9

42.4

00.0

712.6


262.5

91.4

21.2

00.0

542.0


212.0

61.0

21.2

00.0

361.3


212.0

20.3

00.0

00.0

411.5


333.2

132.1

84.8

00.0

1053.9


43741.8

36858.6

4024.1

7231.0

145653.5


104606.

62812.

16583.

303.

272284.


53672.

32506.

8718.

166.

140500.




GeorgiaTrisomy Counts and Prevalence by Maternal Age 2005-2009 (Prevalence per 10,000 Live Births)GeorgiaTrisomy Counts and Prevalence by Maternal Age 2005-2009 (Prevalence per 10,000 Live Births)

Age


10.422045.7

45616.7


163.3

411.5


6814.1

1053.9


48192.

272284.


Notes1.Cases included if gestational age =>36 weeks at birth and PDA is present at or beyond 6 weeks of age, or if PDA is present with other heart defectsregardless of gestational age at birth.

General comments-All totals include definite and probable/possible diagnoses.-All totals include live births and stillbirths >= 20 weeks, elective terminations at any gestational age, and prenatal diagnoses with undocumented outcomeat any gestational age.-All totals include prenatal diagonses.-NCHS bridged race data were not available. Multiple-race individuals are included in the totals only.



HawaiiBirth Defects Counts and Prevalence 2005 (Prevalence per 10,000 Live Births)HawaiiBirth Defects Counts and Prevalence 2005 (Prevalence per 10,000 Live Births)






Amniotic bands 00.0

00.0

00.0

10.8

00.0

10.6

Anencephalus 12.8

00.0

00.0

32.5

00.0

73.9

Aniridia 00.0

00.0

00.0

00.0

00.0

00.0


00.0

00.0

00.0

00.0

10.6


00.0

00.0

75.8

00.0

95.0


00.0

00.0

00.0

00.0

00.0


23562.3

4481.9

163134.1

274.1

228127.2


12.8

00.0

00.0

32.5

00.0

42.2


00.0

1120.5

10.8

00.0

21.1


00.0

00.0

00.0

00.0

00.0


00.0

00.0

00.0

00.0

00.0


124.4

00.0

1512.3

00.0

2212.3


00.0

00.0

1310.7

00.0

168.9


124.4

00.0

10.8

00.0

31.7

Common truncus 00.0

00.0

00.0

21.6

00.0

21.1


00.0

00.0

10.8

00.0

10.6


00.0

00.0

64.9

00.0

105.6


00.0

00.0

10.8

00.0

21.1


124.4

00.0

129.9

00.0

168.9


00.0

00.0

10.8

00.0

10.6

Encephalocele 00.0

124.4

00.0

21.6

00.0

31.7

Epispadias 00.0

00.0

00.0

00.0

00.0

00.0


12.8

00.0

00.0

21.6

00.0

31.7


00.0

00.0

00.0

10.8

00.0

10.6

Gastroschisis 00.0

373.3

00.0

64.9

00.0

95.0

1


12.8

248.9

00.0

21.6

00.0

52.8


00.0

00.0

43.3

00.0

73.9


00.0

00.0

21.6

00.0

31.7

Hypospadias* 429.4

257.5

00.0

2639.0

00.0

3537.7

Microcephalus 00.0

248.9

00.0

64.9

00.0

95.0


5122.2

1120.5

3125.5

00.0

4826.8

Omphalocele 12.8

00.0

00.0

21.6

00.0

42.2

1



HawaiiBirth Defects Counts and Prevalence 2005 (Prevalence per 10,000 Live Births)







20489.0

4481.9

153125.8

274.1

224125.0

2


7171.1

1120.5

2722.2

00.0

4625.7


00.0

00.0

32.5

00.0

84.5


124.4

00.0

64.9

00.0

84.5


00.0

00.0

10.8

00.0

21.1


00.0

00.0

21.6

00.0

52.8


124.4

00.0

32.5

00.0

73.9


00.0

00.0

32.5

00.0

63.3


248.9

00.0

21.6

00.0

42.2


12.8

124.4

00.0

10.8

00.0

31.7


00.0

00.0

54.1

00.0

73.9


00.0

00.0

00.0

00.0

00.0


00.0

00.0

00.0

00.0

00.0


00.0

00.0

21.6

00.0

31.7


6146.7

1120.5

5847.7

00.0

7743.0

3


409.

83.

12158.

270.

17922.


348.

27.

6673.

142.

9275.




HawaiiTrisomy Counts and Prevalence by Maternal Age 2005 (Prevalence per 10,000 Live Births)HawaiiTrisomy Counts and Prevalence by Maternal Age 2005 (Prevalence per 10,000 Live Births)

Age


4.7928.5

168.9


00.0

00.0


13.2

31.7


3159.

17922.


Notes1.Omphalocele and Gastroschisis are reported separately as distinguished from active case ascertainment and by CDC/BPA codes.2.Patent ductus arteriosus: Infants that weigh <2500 grams are excluded.3.Ventricular septal defect: probable cases are included.

General comments-2006-2009 data were not included in this report; however as of 2011, active case ascertainment is in progress for these years.-Data includes stillbirths >/= 20 weeks gestational age.-No major methodological changes to report during the period of 2005. Data collection completed by staff filling out an electronic file/report on laptopat facility.-Pregnancies electively terminated after prenatal diagnosis are included in surveillance data regardless of the gestational age at which they wereterminated.



IllinoisBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)IllinoisBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)







191.2

170.8

30.6

00.0

810.9

Anencephalus 571.2

231.5

411.9

91.9

00.0

1321.5

Aniridia 20.0

00.0

00.0

10.2

00.0

30.0


140.9

271.3

51.1

00.0

1001.1


110.7

592.7

51.1

00.0

1211.4


90.6

140.7

30.6

00.0

1011.1


44829.2

48022.3

6313.3

00.0

217724.5


2134.5

835.4

673.1

61.3

00.0

3714.2


40.3

60.3

00.0

00.0

150.2


30.2

40.2

00.0

00.0

220.2


171.1

200.9

40.8

00.0

871.0


996.4

22510.5

336.9

18.5

7648.6


432.8

1004.7

204.2

00.0

4144.7


332.1

572.7

51.1

00.0

2402.7


80.5

70.3

10.2

00.0

350.4


191.2

150.7

10.2

00.0

650.7


140.9

733.4

91.9

00.0

2943.3


402.6

532.5

81.7

18.5

2082.3


15710.2

33415.5

398.2

325.4

115013.0


30.2

180.8

00.0

00.0

460.5

Encephalocele 220.5

191.2

200.9

30.6

00.0

650.7

Epispadias 521.1

211.4

160.7

10.2

00.0

901.0


1092.3

302.0

351.6

61.3

00.0

1832.1


80.2

110.7

30.1

00.0

00.0

230.3


674.4

1195.5

51.1

00.0

3493.9


461.0

261.7

120.6

40.8

00.0

901.0


18311.9

1687.8

142.9

325.4

6597.4


312.0

401.9

40.8

00.0

1661.9


37227.6

28414.9

6827.9

00.0

220831.1


1419.2

904.2

102.1

00.0

4104.6


30419.8

50723.6

10421.9

00.0

213524.1

Omphalocele 721.5

261.7

331.5

10.2

00.0

1351.5



IllinoisBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)







33521.8

42719.9

6613.9

00.0

189121.3

1


523.4

432.0

71.5

00.0

2442.7


70.5

80.4

20.4

00.0

400.5


40.3

80.4

00.0

00.0

400.5


553.6

793.7

194.0

18.5

3123.5


241.6

221.0

40.8

216.9

1331.5


493.2

492.3

81.7

216.9

2492.8


583.8

904.2

112.3

00.0

3734.2


342.2

653.0

61.3

433.8

2432.7


614.0

552.6

173.6

00.0

2713.1


220.5

80.5

200.9

51.1

00.0

560.6


352.3

512.4

122.5

00.0

2432.7


721.5

181.2

251.2

51.1

00.0

1241.4


281.8

341.6

40.8

00.0

1351.5


261.7

251.2

40.8

00.0

1201.4


181.2

221.0

10.2

216.9

1041.2


412.7

432.0

61.3

433.8

1982.2


45429.6

85839.9

10221.5

00.0

322836.4


153630.

214912.

47544.

1183.

887616.


134849.

190622.

24383.

602.

709479.




IllinoisTrisomy Counts and Prevalence by Maternal Age 2005-2009 (Prevalence per 10,000 Live Births)IllinoisTrisomy Counts and Prevalence by Maternal Age 2005-2009 (Prevalence per 10,000 Live Births)

Age


7.258342.3

115013.0


302.2

1041.2


846.1

1982.2


137749.

887616.


Notes1.Only includes cases where the birth weight >=2500g

General comments-Illinois is under court order that strictly limits the data that can be collected about a termination. The birth defect registry is therefore unable to obtainbirth defect information-In 2009, Illinois reduced the number of charts that were reviewed for birth defects, dropping primarily children with very low-birth weights and noreported associated birth defects



IndianaBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)IndianaBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)






Anencephalus 110.3

20.4

10.3

11.1

00.0

160.4

1

Aniridia 110.3

20.4

10.3

00.0

00.0

140.3


20.4

30.8

11.1

00.0

270.6


20.4

30.8

00.0

00.0

350.8


40.7

20.5

00.0

00.0

571.3


16830.6

9625.0

3537.5

224.0

149134.1

2


1124.4

112.5

103.1

45.8

114.1

1404.0

3


81.5

41.0

11.1

00.0

320.7


10.2

00.0

00.0

00.0

150.3


30.5

51.3

00.0

00.0

561.3


244.4

3910.2

1111.8

112.0

3718.5


234.2

102.6

44.3

00.0

2786.4


183.3

246.2

44.3

00.0

2445.6


10.2

10.3

11.1

00.0

150.3


50.9

00.0

11.1

00.0

280.6


132.4

246.2

44.3

00.0

2896.6


122.2

143.6

11.1

00.0

1152.6


407.3

6216.1

1313.9

112.0

52412.0


10.2

20.5

11.1

00.0

260.6

Encephalocele 220.7

10.2

41.0

00.0

00.0

270.6

Epispadias 270.8

81.5

10.3

11.1

00.0

370.8

4


872.7

81.5

123.1

11.1

112.0

1092.5


1053.3

244.4

71.8

1313.9

00.0

1533.5


193.5

205.2

22.1

00.0

1884.3

5


662.1

122.2

92.3

11.1

00.0

922.1


6411.7

266.8

88.6

112.0

48011.0


91.6

82.1

22.1

00.0

761.7


12445.4

4221.6

1530.9

125.3

135160.5

4


5810.6

348.9

1617.2

112.0

4169.5


9116.6

7619.8

1920.4

112.0

97122.2

Omphalocele 190.6

71.3

30.8

00.0

00.0

290.7

5


12923.5

5614.6

1617.2

224.0

71816.4

6



IndianaBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)







417.5

194.9

77.5

112.0

3157.2


6812.4

9625.0

66.4

448.1

107524.6


132.4

184.7

55.4

112.0

1894.3


101.8

92.3

11.1

00.0

651.5


81.5

133.4

11.1

00.0

972.2


91.6

153.9

11.1

112.0

1333.0


152.7

215.5

11.1

00.0

1834.2

7


142.6

143.6

22.1

00.0

1293.0


210.7

40.7

30.8

00.0

00.0

290.7


203.6

143.6

00.0

00.0

1904.4

8


40.7

41.0

00.0

00.0

340.8

9


30.5

51.3

00.0

00.0

220.5


101.8

10.3

00.0

112.0

491.1


13624.8

13434.9

4245.0

00.0

164837.7

10


54843.

38409.

9325.

832.

436733.


27314.

19413.

4852.

396.

223437.




IndianaTrisomy Counts and Prevalence by Maternal Age 2005-2009 (Prevalence per 10,000 Live Births)IndianaTrisomy Counts and Prevalence by Maternal Age 2005-2009 (Prevalence per 10,000 Live Births)

Age


8.717847.6

52412.0


30.8

220.5


133.5

491.1


37428.

436733.


Notes1.Ancephalus: Indiana does not collect or report information on stillbirths or terminations. Data reported is based on livebirths (2005-2009).2.Atrial septal defect: A more stringent classification was recently adopted. This classification was only applied to 2005 data.3.Atrioventricular septal defect: Data does not distinguish BPA code 745.487 (2005-2009).4.Prior to July 2009, all children reported with either hypospadias or epispadias were reviewed for a combined disorder of 'hypospadias/epispadias.' Sincethat time our system was modified and children are currently reviewed for hypospadius and epispadias separately.5.Indiana utilizes BPA codes to differentiate gastroschisis from omphalocele.6.Patent ductus arterious: Data reported for children who were gestational age e 36 weeks at birth and whose PDA was last noted at e 6 weeks of age(2005-2009). Unable to exclude < 2500 grams infants.7.Spina bifida with anencephalus: Indiana does not collect or report information on stillbirths or terminations. Data reported is based on livebirths(2005-2009).8.Transposition of great arteries: Data includes entire coding range of 745.10 - 745.19 (2005-2009).9.Tricuspid valve atresia and stenosis: Data does not distinguish BPA codes 746.105 or 746.106 (2005-2009).10.Ventricular septal defect: Data does not distinguish BPA code 745.487 (2005-2009). Probable cases included.

General comments-Birth defects rates based on fewer than 20 cases are unstable.-Case ascertainment in Indiana is a combination of passive ascertainment by electronic submission of hospital discharge information and activeascertainment through chart auditing of 45 targeted conditions identified trhough hospital discharge ICD-9-CM codes.-Data includes children whose conditions were classified with a status of either 'confirmed' or 'probable' based on the abstracted information.-Report based on data as of 08/16/2012. As additional information is constantly entering the system, updated data for birth years 2006-2009 will besubmitted, along with 2010 data, in the next report.-The IBDPR changed how maternal residency was defined in 2012



IowaBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)IowaBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)







44.9

10.6

12.1

00.0

261.3

Anencephalus 492.9

33.7

74.3

12.1

00.0

633.1

Aniridia 00.0

00.0

00.0

00.0

00.0

00.0


44.9

74.3

24.2

19.8

502.5


11.2

74.3

00.0

00.0

402.0


22.5

00.0

12.1

219.6

613.0


3441.7

3823.3

919.0

658.7

61130.5


1176.9

78.6

116.7

36.3

00.0

1386.9


11.2

00.0

00.0

00.0

80.4


00.0

00.0

00.0

00.0

80.4


11.2

21.2

12.1

00.0

371.8


89.8

1710.4

510.6

219.6

21210.6


33.7

138.0

24.2

19.8

1306.5


33.7

42.5

12.1

19.8

1005.0


00.0

00.0

12.1

00.0

130.6


11.2

53.1

24.2

19.8

502.5


44.9

74.3

36.3

00.0

1216.0


11.2

10.6

00.0

00.0

231.1


56.1

4125.1

919.0

00.0

30315.1


00.0

10.6

12.1

00.0

160.8

Encephalocele 201.2

11.2

10.6

00.0

00.0

231.1

Epispadias 90.5

00.0

00.0

00.0

00.0

90.4


301.8

00.0

21.2

24.2

00.0

341.7


80.5

00.0

00.0

00.0

00.0

90.4

Gastroschisis 684.0

44.9

127.4

36.3

329.3

904.5


291.7

33.7

31.8

00.0

19.8

361.8


1113.5

159.2

816.9

19.8

22711.3


11.2

31.8

00.0

00.0

432.1


1843.6

2226.3

729.2

118.8

45244.0


1518.4

1811.0

36.3

19.8

21910.9


2227.0

5131.2

1225.3

219.6

55027.4

Omphalocele 513.0

22.5

10.6

12.1

00.0

552.7



IowaBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)







1518.4

5734.9

1429.6

439.1

55727.8


911.1

116.7

612.7

219.6

22511.2


22.5

10.6

12.1

00.0

261.3


1417.2

3622.1

12.1

439.1

49124.5


44.9

159.2

36.3

00.0

994.9


56.1

31.8

24.2

00.0

432.1


89.8

106.1

24.2

19.8

914.5


67.4

95.5

510.6

00.0

1467.3


78.6

138.0

24.2

19.8

994.9


22.5

106.1

12.1

00.0

824.1


211.2

00.0

21.2

00.0

19.8

241.2


22.5

31.8

24.2

00.0

643.2


472.8

11.2

31.8

24.2

00.0

532.6


11.2

31.8

00.0

19.8

472.3


11.2

21.2

00.0

19.8

241.2


11.2

31.8

12.1

00.0

351.7


33.7

63.7

12.1

00.0

613.0


3543.0

8552.1

1838.0

878.2

107153.4


8144.

16324.

4734.

1023.

200585.


4133.

8353.

2395.

533.

102811.




IowaTrisomy Counts and Prevalence by Maternal Age 2005-2009 (Prevalence per 10,000 Live Births)IowaTrisomy Counts and Prevalence by Maternal Age 2005-2009 (Prevalence per 10,000 Live Births)

Age


9.213763.0

30315.1


115.1

351.7


2812.9

613.0


21748.

200585.




KentuckyBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)KentuckyBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)






Amniotic bands 00.0

00.0

00.0

00.0

00.0

00.0

Anencephalus 421.8

<5.

53.6

00.0

00.0

511.8

Aniridia <5.

00.0

00.0

00.0

00.0

<5.


<5.

00.0

00.0

00.0

140.5


<5.

64.3

<5.

00.0

170.6


51.9

<5.

<5.

00.0

401.4


825317.4

188135.0

48124.0

5139.7

4821170.3

1


793.3

135.0

<5.

<5.

00.0

983.5


<5.

<5.

00.0

00.0

170.6

Bladder exstrophy <5.

00.0

00.0

00.0

00.0

50.2


<5.

<5.

00.0

00.0

291.0


197.3

1510.8

<5.

00.0

29510.4


103.8

<5.

<5.

00.0

1394.9


135.0

53.6

<5.

00.0

1615.7

Common truncus 90.4

<5.

<5.

00.0

00.0

120.4


<5.

<5.

00.0

00.0

200.7


93.5

85.7

<5.

00.0

2097.4


72.7

<5.

00.0

00.0

682.4


3212.3

2316.5

820.7

00.0

35612.6


00.0

00.0

00.0

00.0

150.5

Encephalocele 110.5

00.0

<5.

00.0

00.0

120.4

Epispadias 191.4

<5.

00.0

00.0

00.0

231.4


562.4

51.9

<5.

<5.

00.0

672.4


200.8

135.0

<5.

00.0

00.0

411.4

Gastroschisis 833.5

72.7

75.0

00.0

00.0

1063.7


492.1

135.0

<5.

<5.

00.0

692.4


103.8

<5.

<5.

<5.

1415.0


93.5

64.3

00.0

00.0

772.7


9874.2

3042.4

<5.

<5.

115779.9

Microcephalus 753.2

166.2

<5.

00.0

00.0

943.3


4617.7

3424.4

820.7

<5.

58020.5

Omphalocele 231.0

62.3

<5.

00.0

00.0

331.2



KentuckyBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)







356137.0

9266.1

1949.1

<5.

215075.9

2


197.3

75.0

<5.

00.0

2097.4


4216.2

2215.8

<5.

<5.

95233.6


207.7

75.0

512.9

00.0

1615.7


<5.

<5.

00.0

00.0

471.7


<5.

<5.

<5.

<5.

511.8


83.1

<5.

<5.

00.0

1023.6


114.2

<5.

00.0

00.0

1013.6


93.5

<5.

00.0

00.0

923.2


71.5

00.0

00.0

00.0

00.0

71.3


103.8

53.6

<5.

00.0

1083.8


<5.

<5.

<5.

00.0

260.9


00.0

<5.

00.0

00.0

250.9


62.3

<5.

00.0

00.0

501.8


14254.6

6345.2

1538.7

00.0

130946.2

3


25992.

13924.

3872.

358.

283168.


13215.

7070.

2008.

187.

144867.




KentuckyTrisomy Counts and Prevalence by Maternal Age 2005-2009 (Prevalence per 10,000 Live Births)KentuckyTrisomy Counts and Prevalence by Maternal Age 2005-2009 (Prevalence per 10,000 Live Births)

Age


8.313549.5

35612.6


62.2

250.9


114.0

501.8


27252.

283168.


Notes1.Atrial septal defect: Probable cases are included2.Patent ductus arteriosus: includes only babies over 2500 g3.Ventricular septal defect: Probable cases are included

General comments-2007-2009 data is preliminary-Although some terminations are issued stillbirth certificates, we do not collect data about terminations-Use ICD-9 codes



LouisianaBirth Defects Counts and Prevalence 2005-2008 (Prevalence per 10,000 Live Births)LouisianaBirth Defects Counts and Prevalence 2005-2008 (Prevalence per 10,000 Live Births)






Amniotic bands 81.1

61.1

<5.

00.0

00.0

151.1

Anencephalus 101.1

81.2

00.0

00.0

00.0

181.1

Aniridia 00.0

<5.

00.0

00.0

00.0

<5.


60.9

00.0

00.0

00.0

150.9


00.0

<5.

00.0

00.0

120.7


111.6

00.0

<5.

00.0

311.8


37153.7

4251.0

1959.4

572.3

93355.1


637.2

324.6

<5.

515.6

00.0

1046.1


81.2

<5.

<5.

00.0

221.3


<5.

<5.

00.0

<5.

100.6


81.2

<5.

00.0

00.0

251.5


466.7

1315.8

<5.

<5.

1478.7


355.1

67.3

<5.

00.0

1166.9


284.1

56.1

<5.

00.0

724.3


50.7

00.0

<5.

00.0

181.1


121.7

<5.

00.0

00.0

241.4


202.9

<5.

<5.

<5.

885.2


121.7

56.1

00.0

00.0

442.6


608.7

1012.1

1134.4

<5.

21812.9


50.9

<5.

00.0

00.0

131.0

Encephalocele 70.8

101.4

<5.

00.0

00.0

181.1

Epispadias 121.4

81.2

00.0

00.0

00.0

201.2


222.5

152.2

<5.

<5.

00.0

402.4


91.3

132.4

<5.

00.0

<5.

241.8

Gastroschisis 556.3

223.2

00.0

00.0

00.0

774.5


273.1

233.3

<5.

00.0

00.0

513.0


527.5

56.1

<5.

<5.

1076.3


121.7

<5.

00.0

<5.

271.6


18953.8

1126.2

<5.

<5.

55163.8

Microcephalus 728.2

9914.3

67.3

<5.

00.0

17910.6


15322.1

1720.6

515.6

<5.

43525.7

Omphalocele 121.4

162.3

<5.

00.0

<5.

311.8



LouisianaBirth Defects Counts and Prevalence 2005-2008 (Prevalence per 10,000 Live Births)







21230.7

2327.9

928.2

<5.

58834.7

1


547.8

<5.

<5.

00.0

1358.0


81.2

00.0

00.0

00.0

211.2


426.1

1214.6

<5.

<5.

20712.2


253.6

<5.

<5.

<5.

744.4


152.2

<5.

00.0

00.0

291.7


192.7

<5.

00.0

00.0

412.4


334.8

<5.

00.0

00.0

824.8


142.0

<5.

<5.

00.0

533.1


273.9

<5.

00.0

00.0

744.4


192.7

<5.

<5.

<5.

633.7


374.2

182.6

<5.

<5.

<5.

583.4

Tricuspid valve atresia and stenosis <5.

111.6

<5.

<5.

00.0

171.0

Tricuspid valve atresia <5.

91.3

<5.

<5.

00.0

150.9

Trisomy 13 (Patau syndrome) <5.

<5.

<5.

00.0

00.0

90.7


60.9

<5.

<5.

00.0

271.6


28741.5

3947.4

1546.9

<5.

85250.3


54755.

6989.

2525.

588.

136201.


35126.

4196.

1654.

331.

86377.




LouisianaTrisomy Counts and Prevalence by Maternal Age 2005-2008 (Prevalence per 10,000 Live Births)LouisianaTrisomy Counts and Prevalence by Maternal Age 2005-2008 (Prevalence per 10,000 Live Births)

Age


7.610162.0

21812.9


<5.

90.7


95.5

271.6


16280.

169283.


Notes1.Includes only if weight =>2500 grams or gestational age >=36 wks, however, unable to define if defect lasted at >= 6 wks of age

General comments-2005-2006 birth data include only live births to Louisiana residents at birth that occurred in regions Greater New Orleans, Baton Rouge, Lake Charlesand Shreveport-2005-2006 birth defects data include only live births to Louisiana residents at birth that occurred in Greater New Orleans, Baton Rouge, Lake Charlesand Shreveport areas.-2007 birth defects data include only live births to Louisiana residents at birth that occurred in Greater New Orleans, Baton Rouge, Lafayette, LakeCharles and Shreveport areas-2007-2009 birth data include only live births to Louisiana residents at birth that occurred in regions Greater New Orleans, Baton Rouge, Lafayette, LakeCharles and Shreveport-2008 birth defects data are provisional and include only live births to Louisiana residents that occurred in Greater New Orleans, Baton Rouge, Lafayette,Lake Charles and Shreveport-2009 birth defects data are not available-All probable cases are included-BPA codes are used to define the birth defects-Hurricane Katrina disrupted the active surveillance in Louisiana and may have created several types of selection bias.-Louisiana is an active surveillance state that began identifying births in 2005. Birth defects surveillance has not been conducted among terminations andstill births yet-The 2009 cohort will not be complete until 12/31/2012 because the LA case definition includes children up to their third birthday.



MaineBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)MaineBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)






Anencephalus 60.9

00.0

00.0

00.0

00.0

71.0


00.0

00.0

218.0

117.8

598.7


00.0

00.0

00.0

00.0

548.0


00.0

00.0

00.0

00.0

304.4

Common truncus 60.9

00.0

00.0

00.0

00.0

60.9


16.2

330.3

00.0

117.8

8612.7

Encephalocele 10.2

00.0

110.1

00.0

00.0

20.3

Gastroschisis 386.0

00.0

00.0

19.0

00.0

395.8

1


00.0

00.0

00.0

00.0

192.8

Hypospadias* 7358.2

251.9

297.6

143.1

00.0

7857.6

2

Omphalocele 152.4

00.0

00.0

00.0

00.0

162.4

3


00.0

00.0

00.0

00.0

30.4


00.0

00.0

00.0

00.0

20.8

2


00.0

00.0

00.0

141.5

31.1

2


16.2

00.0

00.0

00.0

233.4


00.0

110.1

00.0

00.0

223.2

4


16.2

00.0

00.0

117.8

324.7


213.3

16.2

00.0

00.0

00.0

223.2


00.0

00.0

00.0

00.0

20.3


1601.

990.

1112.

562.

67735.

Total Male Live Births (2008-2009) 12534.

385.

205.

232.

131.

13536.




MaineTrisomy Counts and Prevalence by Maternal Age 2005-2009 (Prevalence per 10,000 Live Births)MaineTrisomy Counts and Prevalence by Maternal Age 2005-2009 (Prevalence per 10,000 Live Births)

Age


7.94042.3

8612.7


9451.

67735.


Notes1.Gastroschisis is coded 756.73. Cases are also abstracted to determine diagnosis2.Surveillance for this condition began with 2008 births3.Omphalocele is coded 756.72. Cases are also abstracted to determine diagnosis4.Includes pulmonary atresia with septal defect



MarylandBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)MarylandBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)






Amniotic bands 30.3

30.4

10.3

10.7

00.0

80.3

Anencephalus 714.0

322.5

122.4

41.6

00.0

1303.4

Aniridia 10.3

00.0

00.0

00.0

00.0

10.1


70.5

00.0

00.0

00.0

100.3


20.2

91.8

20.8

00.0

240.6


00.0

10.3

00.0

00.0

40.2


292.3

122.4

41.6

00.0

731.9


281.6

231.8

40.8

10.4

00.0

561.5


20.4

00.0

00.0

00.0

20.1


10.1

00.0

00.0

00.0

110.4


20.2

41.0

00.0

00.0

60.2


614.8

499.9

156.0

112.4

3108.1


252.0

30.6

41.6

00.0

1203.1


70.5

10.2

31.2

00.0

240.6

Common truncus 10.1

20.3

10.3

00.0

00.0

40.2


10.1

00.0

10.5

00.0

50.2


80.6

71.4

20.8

00.0

521.4


181.4

51.0

20.8

00.0

541.4


1269.9

428.5

3011.9

112.4

42911.2


00.0

00.0

00.0

00.0

70.2

Encephalocele 140.8

60.5

10.2

00.0

00.0

220.6

Epispadias 50.3

10.1

20.5

21.0

00.0

100.3


291.6

221.7

61.2

10.4

00.0

601.6


00.0

00.0

11.2

00.0

00.0

10.1


50.3

30.3

00.0

00.0

00.0

80.3


574.5

163.2

62.4

00.0

1554.1


110.9

10.2

41.6

00.0

391.0


24337.6

4618.2

3123.7

.

.75838.8

Microcephalus 70.4

110.9

61.2

00.0

00.0

240.6


50.5

00.0

10.5

00.0

190.6


151.2

51.0

20.8

00.0

441.2

1


50.5

00.0

21.0

00.0

140.5



MarylandBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)







10.2

00.0

00.0

00.0

40.3


00.0

00.0

00.0

00.0

20.1


221.7

61.2

41.6

00.0

681.8


231.8

40.8

10.4

00.0

641.7


342.7

122.4

41.6

00.0

1032.7


362.8

61.2

62.4

00.0

1112.9


272.1

183.6

52.0

00.0

1193.1


181.4

30.6

52.0

00.0

461.2


141.1

51.0

52.0

00.0

511.3


70.5

50.5

41.0

10.5

00.0

180.6


131.0

20.4

31.2

00.0

421.1


221.7

153.0

62.4

00.0

1193.1


333.2

71.8

105.2

00.0

892.9

2


127578.

49402.

25178.

809.

382305.


64568.

25241.

13105.

.

.195508.




MarylandTrisomy Counts and Prevalence by Maternal Age 2005-2009 (Prevalence per 10,000 Live Births)MarylandTrisomy Counts and Prevalence by Maternal Age 2005-2009 (Prevalence per 10,000 Live Births)

Age


6.522531.7

42911.2


202.8

421.1


699.7

1193.1


70967.

382634.


Notes1.Weight greater than or equal to 2500 grams2.Includes probable cases

General comments-Critical Congenital Heart Defect - Data is based on hospital reporting and can not be validated through Vital Statistics as there is no requirement tospecify the cardiac defect on the birth certificate.-Hispanic: Includes all births to mothers of Hispanic origin of any race.-The total number of births data was receieved from Vital Statistics-The total number of male live births is not available for American Indian/Alaskan Native category-Total births: Includes races categorized as 'other' .-White(Total), Black, American Indian, Asian or Pacific Islander: Race and Hispanic origin are reported separately on the birth certificate. Data forpersons of Hispanic origin are included in the data for each race group according to the mother' s reported race.



MassachusettsBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)MassachusettsBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)







61.8

101.9

10.4

112.3

360.9

Anencephalus 140.5

20.6

50.9

20.7

00.0

250.6

Aniridia 00.0

00.0

10.2

10.4

00.0

20.1


123.7

91.7

20.7

00.0

411.1


30.9

132.4

103.5

00.0

691.8


82.5

81.5

10.4

00.0

651.7


7924.2

9317.4

4415.5

336.8

73219.0


1355.2

268.0

213.9

51.8

00.0

1945.0


10.3

20.4

51.8

112.3

210.5


00.0

10.2

00.0

00.0

50.1

1


10.3

30.6

00.0

00.0

290.8


175.2

427.8

258.8

00.0

3078.0


113.4

285.2

62.1

00.0

2155.6


103.1

193.5

51.8

112.3

1664.3


10.3

20.4

00.0

112.3

160.4


134.0

163.0

31.1

00.0

1002.6


103.1

81.5

51.8

112.3

1002.6


5717.5

8014.9

258.8

336.8

48712.7


10.3

20.4

00.0

00.0

130.3

Encephalocele 50.2

00.0

10.2

00.0

00.0

70.2


742.8

51.5

132.4

20.7

112.3

982.5

Gastroschisis 793.0

144.3

264.9

41.4

00.0

1323.4


582.2

30.9

122.2

72.5

112.3

832.2


247.4

264.9

41.4

00.0

1223.2


41.2

91.7

20.7

00.0

591.5


4426.4

3914.2

2819.1

124.4

48224.5

2

Microcephalus 481.8

103.1

132.4

10.4

112.3

741.9

3


4212.9

9718.1

4214.8

00.0

55614.5

Omphalocele 271.0

72.1

91.7

20.7

00.0

471.2


8124.8

8515.9

4214.8

336.8

66717.3

4


278.3

407.5

134.6

00.0

2536.6


20.6

40.7

00.0

00.0

230.6



MassachusettsBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)







61.8

203.7

134.6

112.3

1173.0


61.8

142.6

31.1

00.0

521.4


61.8

264.9

51.8

112.3

1042.7


51.5

20.4

10.4

00.0

170.4

5


51.5

112.1

41.4

00.0

641.7


216.4

315.8

155.3

00.0

1784.6


220.8

30.9

40.7

51.8

00.0

340.9


103.1

132.4

41.4

112.3

1243.2


803.1

72.1

132.4

41.4

112.3

1092.8


20.6

20.4

00.0

00.0

230.6


41.2

40.7

00.0

00.0

270.7


123.7

132.4

72.5

00.0

631.6


6921.2

10519.6

5619.7

00.0

72718.9

6


32623.

53524.

28389.

815.

384688.


16682.

27423.

14688.

409.

197041.




MassachusettsTrisomy Counts and Prevalence by Maternal Age 2005-2009 (Prevalence per 10,000 Live Births)MassachusettsTrisomy Counts and Prevalence by Maternal Age 2005-2009 (Prevalence per 10,000 Live Births)

Age


7.327030.4

48712.7


131.5

270.7


353.9

631.6


88756.

384688.


Notes1.Excludes isolated diagnosis without surgical intervention and secondary diagnosis without postnatal confirmation.2.Excludes 1st degree and NOS.3.Defined as head circumference 2 std dev below normal.4.Wt <=2500 gms is excluded. We use a decision tree for coding PDA: never code if on PGE or <36 wks GA. If >=6 weeks code. If <6 wks code iftreated with indocin, ligated or surgically closed or associated with other codable defect.5.Excludes isolated unilateral renal agenesis/hypoplasia.6.Excludes isolated muscular VSDs.

General comments-2009 data are provisional.-Coding system is CDC/BPA.-Differences in numbers from previous publications are the result of updated files.-Possible/probable cases are excluded.-Source for race and Hispanic ethnicity is vital records.-Stillbirths are included, terminations are not included.



MichiganBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)MichiganBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)






Anencephalus 751.7

121.1

20.4

31.5

13.3

1041.7

Aniridia 110.3

30.3

00.0

00.0

00.0

140.2


232.1

30.7

31.5

00.0

1021.6


60.5

51.1

42.0

00.0

671.1


100.9

92.0

83.9

00.0

1612.6


1285116.2

25055.1

15073.7

2788.3

580793.8


2405.5

676.1

143.1

115.4

00.0

3615.8


211.9

10.2

52.5

00.0

671.1


10.1

00.0

10.5

13.3

200.3


161.4

30.7

31.5

00.0

931.5


706.3

194.2

2411.8

39.8

65010.5


504.5

132.9

115.4

39.8

3976.4


716.4

214.6

125.9

26.5

4457.2


201.8

51.1

31.5

00.0

881.4


181.6

30.7

52.5

26.5

1322.1


575.2

224.9

209.8

00.0

67110.8


312.8

81.8

62.9

13.3

2213.6


12911.7

429.3

2612.8

39.8

81513.2


90.8

20.4

31.5

00.0

530.9

Encephalocele 421.0

191.7

61.3

00.0

00.0

681.1

Epispadias 390.9

111.0

00.0

00.0

00.0

520.8


1272.9

222.0

61.3

62.9

00.0

1732.8


330.8

222.0

10.2

10.5

00.0

570.9


716.4

184.0

31.5

516.3

4006.5

1


1072.5

454.1

40.9

52.5

13.3

1762.8


15213.7

214.6

188.8

929.4

62210.0


585.2

92.0

73.4

13.3

2964.8


29552.4

4720.2

4946.4

1064.7

188259.3


13111.8

306.6

2210.8

26.5

5949.6


20218.3

6414.1

3517.2

722.9

136322.0

Omphalocele 00.0

00.0

00.0

00.0

00.0

00.0

1


48043.4

11224.7

5024.6

929.4

203132.8



MichiganBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)







17816.1

306.6

2713.3

413.1

73211.8


393.5

92.0

62.9

26.5

1612.6


938.4

6514.3

167.9

516.3

106517.2


484.3

143.1

125.9

26.5

3155.1


292.6

71.5

10.5

26.5

1282.1


242.2

92.0

21.0

26.5

1522.5


676.1

153.3

146.9

413.1

3505.7


423.8

143.1

167.9

26.5

3395.5


736.6

163.5

115.4

13.3

3866.2


461.1

242.2

40.9

52.5

39.8

941.5


585.2

81.8

136.4

516.3

4076.6


1804.1

292.6

30.7

83.9

39.8

2564.1


181.6

20.4

31.5

13.3

981.6


141.3

51.1

21.0

00.0

560.9


242.2

30.7

31.5

00.0

861.4


48644.0

9520.9

8642.2

1136.0

276044.6

2


110569.

45356.

20365.

3059.

619332.


56291.

23221.

10570.

1545.

317259.




MichiganTrisomy Counts and Prevalence by Maternal Age 2005-2009 (Prevalence per 10,000 Live Births)MichiganTrisomy Counts and Prevalence by Maternal Age 2005-2009 (Prevalence per 10,000 Live Births)

Age


8.333440.7

81513.2


121.5

560.9


344.1

861.4


82140.

619332.


Notes1.ICD-9 coding - 1st available for 2010 data2.Include all reported with this code - may include probable cases



MinnesotaBirth Defects Counts and Prevalence 2006-2009 (Prevalence per 10,000 Live Births)MinnesotaBirth Defects Counts and Prevalence 2006-2009 (Prevalence per 10,000 Live Births)






Anencephalus 10.2

10.6

21.7

21.8

18.7

70.7

Aniridia 00.0

00.0

00.0

10.9

00.0

10.1


21.1

10.9

00.0

00.0

70.7


10.6

32.6

00.0

00.0

90.9


10.6

10.9

10.9

00.0

60.6


4525.7

2017.3

2320.3

18.7

17117.7


265.0

74.0

43.5

65.3

00.0

464.7


00.0

00.0

10.9

00.0

60.6


00.0

00.0

00.0

00.0

10.1


31.7

32.6

00.0

00.0

101.0


148.0

1513.0

108.8

326.2

9710.0


63.4

119.5

43.5

18.7

656.7


116.3

43.5

54.4

00.0

495.1

Common truncus 30.6

10.6

10.9

00.0

00.0

50.5


10.6

10.9

10.9

00.0

111.1


74.0

43.5

00.0

18.7

363.7


00.0

43.5

32.6

00.0

262.7


3419.4

1613.9

108.8

217.4

14114.6


00.0

10.9

00.0

00.0

20.2

Encephalocele 10.2

21.1

00.0

00.0

00.0

30.3

Epispadias 51.0

10.6

00.0

00.0

00.0

60.6


193.7

42.3

21.7

10.9

00.0

282.9

Gastroschisis 142.7

63.4

76.1

108.8

18.7

404.1


81.6

31.7

21.7

10.9

00.0

151.5


63.4

32.6

00.0

00.0

232.4


31.7

32.6

00.0

00.0

232.4


4651.6

1525.6

1118.8

00.0

22545.6

Microcephalus 101.9

169.1

86.9

65.3

00.0

434.4


4928.0

3631.2

2118.5

00.0

27328.2

Omphalocele 51.0

52.9

32.6

00.0

00.0

131.3


4324.6

2219.1

1311.5

18.7

16517.0


84.6

97.8

76.2

18.7

555.7



MinnesotaBirth Defects Counts and Prevalence 2006-2009 (Prevalence per 10,000 Live Births)







21.1

10.9

32.6

00.0

101.0


137.4

2017.3

32.6

761.0

16717.2


74.0

54.3

21.8

00.0

303.1


42.3

10.9

00.0

00.0

80.8


42.3

21.7

43.5

00.0

161.7


42.3

76.1

32.6

00.0

343.5


31.7

32.6

10.9

18.7

282.9


74.0

10.9

65.3

00.0

434.4


74.0

32.6

76.2

00.0

394.0


203.9

74.0

32.6

76.2

00.0

383.9


31.7

00.0

10.9

00.0

70.7


42.3

32.6

00.0

00.0

90.9


52.9

10.9

21.8

00.0

192.0


7040.0

5345.9

2219.4

652.3

31432.4


17508.

11542.

11349.

1147.

96859.


8919.

5850.

5858.

570.

49385.




MinnesotaTrisomy Counts and Prevalence by Maternal Age 2006-2009 (Prevalence per 10,000 Live Births)MinnesotaTrisomy Counts and Prevalence by Maternal Age 2006-2009 (Prevalence per 10,000 Live Births)

Age


4.76135.6

14114.6


31.8

90.9


63.5

192.0


17135.

96859.


General comments-All data include confirmed cases only-All data include live births only-Data are for Hennepin and Ramsey Counties only-Minnesota uses BPA codes



MississippiBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)MississippiBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)






Anencephalus 40.4

60.6

00.0

00.0

00.0

100.4

Aniridia 10.1

10.1

00.0

00.0

00.0

20.1


60.6

00.0

00.0

00.0

120.5


70.7

11.4

00.0

00.0

200.9


80.8

00.0

00.0

00.0

251.1


62462.7

1723.3

1043.3

21136.1

116452.3


272.4

404.0

34.1

14.3

00.0

723.2


60.6

11.4

00.0

213.0

140.6


10.1

00.0

00.0

00.0

40.2


10.1

00.0

00.0

16.5

40.2


545.4

56.9

521.6

319.4

1456.5


343.4

22.7

313.0

00.0

863.9


171.7

34.1

00.0

00.0

602.7

Common truncus 40.4

50.5

00.0

00.0

00.0

90.4


60.6

00.0

00.0

00.0

100.4


161.6

11.4

28.7

00.0

411.8


232.3

45.5

00.0

00.0

421.9


656.5

79.6

00.0

16.5

1727.7


90.9

11.4

00.0

00.0

180.8

Encephalocele 50.4

40.4

11.4

00.0

00.0

100.4

Epispadias 10.1

30.3

00.0

00.0

00.0

40.2


211.9

161.6

00.0

00.0

213.0

401.8


151.3

151.5

00.0

00.0

00.0

311.4


262.3

333.3

00.0

14.3

00.0

622.8


868.6

45.5

00.0

213.0

1657.4


222.2

00.0

00.0

00.0

542.4


23546.3

38.0

18.6

112.7

41336.3

Microcephalus 908.0

20720.8

22.7

14.3

532.4

31013.9


14714.8

45.5

313.0

16.5

30713.8


22022.1

1419.2

521.6

958.3

44119.8

1


10210.3

34.1

14.3

16.5

1707.6


626.2

56.9

14.3

16.5

2169.7



MississippiBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)







272.7

22.7

14.3

16.5

572.6


121.2

00.0

00.0

00.0

231.0


90.9

11.4

14.3

00.0

281.3


222.2

11.4

00.0

00.0

462.1


141.4

11.4

14.3

16.5

572.6


494.9

22.7

28.7

16.5

1115.0


444.4

22.7

14.3

00.0

833.7


222.2

11.4

14.3

00.0

431.9


70.7

00.0

14.3

00.0

140.6


121.2

11.4

00.0

00.0

231.0


31531.7

2027.4

417.3

1064.8

69631.3

2


99477.

7297.

2311.

1543.

222541.


50705.

3745.

1169.

785.

113802.




MississippiTrisomy Counts and Prevalence by Maternal Age 2005-2009 (Prevalence per 10,000 Live Births)MississippiTrisomy Counts and Prevalence by Maternal Age 2005-2009 (Prevalence per 10,000 Live Births)

Age


5.95030.1

1727.7


10.6

140.6


42.4

231.0


16619.

222541.


Notes1.Cases with =>2500 grams Birth Weights are included for Patent ductus arteriosus.2.Mississippi does not indicate probable causes

General comments-Mississippi uses the ICD-9 coding system.



MissouriBirth Defects Counts and Prevalence 2005-2007 (Prevalence per 10,000 Live Births)MissouriBirth Defects Counts and Prevalence 2005-2007 (Prevalence per 10,000 Live Births)






Anencephalus 392.1

51.4

64.4

11.8

00.0

512.1


113.0

10.7

00.0

00.0

461.9


528145.9

140103.8

65117.5

16140.6

2770114.6


185.0

2014.8

610.8

217.6

29312.1


185.0

118.2

00.0

18.8

1737.2


298.0

64.4

11.8

18.8

1968.1


10.3

00.0

00.0

00.0

220.9


102.8

32.2

11.8

00.0

833.4


174.7

53.7

47.2

00.0

1245.1


3910.8

3123.0

1527.1

326.4

39216.2


5114.1

1511.1

35.4

18.8

24310.1


113.0

21.5

00.0

00.0

853.5


339.1

85.9

23.6

00.0

1566.5


5314.6

4231.1

1425.3

435.1

56323.3


20656.9

6951.2

2545.2

543.9

131654.4


5414.9

3626.7

23.6

435.1

71329.5


154.1

107.4

23.6

18.8

1446.0


71.9

00.0

23.6

00.0

542.2


92.5

10.7

11.8

00.0

672.8


92.5

64.4

23.6

217.6

1305.4


92.5

53.7

11.8

00.0

1114.6


185.0

53.7

23.6

00.0

1225.0


195.2

10.7

35.4

00.0

1335.5


61.7

64.4

23.6

00.0

331.4


113.0

64.4

11.8

00.0

542.2


16445.3

6246.0

2036.1

326.4

111045.9


36197.

13485.

5533.

1138.

241783.



MissouriTrisomy Counts and Prevalence by Maternal Age 2005-2007 (Prevalence per 10,000 Live Births)MissouriTrisomy Counts and Prevalence by Maternal Age 2005-2007 (Prevalence per 10,000 Live Births)

Age


11.314757.5

39216.2


83.1

331.4


259.8

542.2


25548.

241783.


General comments-Missouri has a passive surveillance system and uses ICD-9 codes to identify birth defect cases.-Our surveillance systems uses information from the following files to ascertain cases: birth certificates, death certificates, fetal death certificates,newborn inpatient abstract system, pediatric in- and outpatient abstracts



NebraskaBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)NebraskaBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)






Amniotic bands 80.8

00.0

00.0

00.0

00.0

80.6

Anencephalus 333.1

22.3

83.8

00.0

14.3

443.1

1

Aniridia 10.1

11.2

00.0

00.0

00.0

20.1


00.0

21.0

00.0

00.0

120.9


11.2

146.7

26.4

00.0

322.3


11.2

21.0

00.0

14.3

271.9


2630.2

4019.2

619.3

312.9

31122.2


201.9

11.2

21.0

00.0

00.0

231.6


22.3

41.9

00.0

00.0

141.0


00.0

00.0

00.0

00.0

40.3


22.3

31.4

00.0

00.0

251.8


44.7

2311.1

26.4

625.9

15210.9


44.7

115.3

26.4

14.3

835.9


00.0

83.8

13.2

00.0

815.8

Common truncus 50.5

00.0

10.5

00.0

14.3

70.5


11.2

31.4

13.2

14.3

352.5


11.2

167.7

412.9

312.9

1188.4


11.2

62.9

00.0

00.0

342.4


1011.6

3617.3

412.9

14.3

21515.4


00.0

31.4

00.0

00.0

120.9

Encephalocele 40.4

22.3

41.9

13.2

00.0

120.9

Epispadias 50.5

00.0

00.0

13.2

00.0

60.4


141.3

11.2

73.4

00.0

00.0

221.6


10.1

00.0

00.0

00.0

00.0

10.1

Gastroschisis 454.3

11.2

104.8

13.2

521.6

644.6


272.6

11.2

62.9

39.7

14.3

382.7


44.7

157.2

26.4

14.3

987.0


00.0

62.9

00.0

00.0

493.5


2556.8

3330.8

743.9

216.3

44461.9

Microcephalus 575.4

89.3

2110.1

26.4

28.6

936.6

Omphalocele 272.6

22.3

52.4

13.2

00.0

362.6


2225.6

4320.7

516.1

14.3

30721.9



NebraskaBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)







89.3

62.9

00.0

00.0

815.8


11.2

41.9

00.0

14.3

191.4


44.7

3014.4

39.7

14.3

24117.2


22.3

136.3

412.9

14.3

866.1


22.3

00.0

00.0

00.0

221.6


44.7

83.8

00.0

00.0

483.4


22.3

94.3

13.2

00.0

624.4


1011.6

115.3

13.2

00.0

1148.1


11.2

62.9

00.0

14.3

443.1


60.6

00.0

73.4

00.0

00.0

130.9


22.3

52.4

00.0

00.0

614.4


504.8

11.2

52.4

00.0

00.0

574.1


11.2

10.5

00.0

14.3

130.9


22.3

73.4

00.0

00.0

241.7


55.8

31.4

00.0

14.3

372.6


2225.6

8339.9

722.5

625.9

53538.2


8597.

20794.

3107.

2317.

139995.


4405.

10712.

1593.

1224.

71711.




NebraskaTrisomy Counts and Prevalence by Maternal Age 2005-2009 (Prevalence per 10,000 Live Births)NebraskaTrisomy Counts and Prevalence by Maternal Age 2005-2009 (Prevalence per 10,000 Live Births)

Age


10.88741.2

21515.4


41.9

241.7


157.1

372.6


21105.

139995.


Notes1.Includes probable cases

General comments-2009 data are complete



NevadaBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)NevadaBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)






Anencephalus 00.0

00.0

81.1

00.0

00.0

80.4

Aniridia 00.0

00.0

00.0

00.0

00.0

00.0


21.2

81.1

00.0

00.0

170.9


00.0

10.1

00.0

00.0

60.3


21.2

141.9

21.3

00.0

412.1


178104.7

51368.0

10569.1

1251.3

134768.9


232.8

31.8

283.7

10.7

00.0

562.9


10.6

20.3

42.6

00.0

130.7


00.0

10.1

00.0

00.0

60.3


10.6

131.7

00.0

00.0

221.1


127.1

7810.3

95.9

312.8

1829.3


42.4

334.4

32.0

00.0

773.9


74.1

435.7

106.6

14.3

1186.0

Common truncus 70.8

00.0

91.2

21.3

00.0

180.9


21.2

70.9

00.0

00.0

120.6


116.5

385.0

53.3

14.3

1135.8


21.2

192.5

32.0

00.0

532.7


2212.9

13217.5

1912.5

14.3

27113.9


00.0

91.2

10.7

00.0

191.0

Encephalocele 40.5

42.4

30.4

00.0

00.0

120.6

Epispadias 40.5

00.0

00.0

00.0

00.0

40.2


182.2

63.5

141.9

42.6

00.0

432.2


192.3

84.7

30.4

21.3

14.3

341.7


141.7

137.6

91.2

32.0

00.0

402.0


1911.2

537.0

53.3

14.3

1266.4


52.9

233.0

21.3

00.0

442.3


3742.6

9224.0

1519.2

543.6

37537.5

Microcephalus 313.7

95.3

263.4

10.7

00.0

703.6


2615.3

20527.2

3623.7

625.7

53327.3


15490.5

46061.0

9361.2

938.5

119661.2

1


2112.3

668.7

149.2

28.6

1839.4


31.8

111.5

53.3

00.0

331.7



NevadaBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)







158.8

13017.2

53.3

417.1

32116.4


95.3

273.6

74.6

00.0

713.6


42.4

131.7

00.0

00.0

241.2


31.8

162.1

00.0

14.3

351.8


95.3

212.8

95.9

00.0

753.8


52.9

212.8

00.0

00.0

371.9


116.5

405.3

21.3

14.3

1135.8


70.8

00.0

91.2

10.7

00.0

170.9


63.5

344.5

10.7

14.3

854.3


182.2

31.8

131.7

00.0

14.3

381.9


63.5

81.1

10.7

14.3

251.3


10.6

40.5

00.0

00.0

100.5


31.8

162.1

21.3

00.0

291.5


5934.7

38350.8

4529.6

1251.3

86144.1

2


17008.

75436.

15205.

2338.

195437.


8686.

38335.

7825.

1147.

100089.




NevadaTrisomy Counts and Prevalence by Maternal Age 2005-2009 (Prevalence per 10,000 Live Births)NevadaTrisomy Counts and Prevalence by Maternal Age 2005-2009 (Prevalence per 10,000 Live Births)

Age


7.211945.2

27113.9


20.8

100.5


103.8

291.5


26313.

195437.


Notes1.Includes birth weight => 2500 grams2.Ventricular septal defect: excluded if <2500 grams birth weight or < 36 weeks gestation. Probable cases excluded.

General comments-Data are reported for live births and Nevada resident births only.-Nevada uses ICD-9 Coding system.-Probable/possible diagnoses are excluded.



New HampshireBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)New HampshireBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)






Amniotic bands 20.3

00.0

00.0

00.0

00.0

40.6

Anencephalus 20.3

00.0

00.0

14.0

00.0

60.9

Aniridia 20.3

00.0

00.0

00.0

00.0

20.3


19.3

00.0

00.0

00.0

50.7


00.0

00.0

14.0

00.0

101.4


00.0

00.0

00.0

00.0

101.4


19.3

337.5

416.2

00.0

9113.0


142.2

19.3

00.0

14.0

00.0

263.7


00.0

00.0

00.0

00.0

40.6


00.0

00.0

00.0

00.0

00.0


00.0

00.0

00.0

00.0

20.3


00.0

112.5

28.1

00.0

547.7


00.0

00.0

28.1

179.4

466.6


00.0

00.0

00.0

00.0

233.3

Common truncus 30.5

00.0

00.0

00.0

00.0

50.7


19.3

00.0

00.0

00.0

81.1


00.0

225.0

00.0

00.0

446.3


00.0

00.0

312.1

00.0

152.1


19.3

112.5

416.2

179.4

7510.7


00.0

00.0

00.0

00.0

50.7

Encephalocele 20.3

00.0

00.0

00.0

00.0

40.6

Epispadias 50.8

00.0

00.0

00.0

00.0

60.9


101.6

00.0

00.0

00.0

00.0

142.0


20.3

00.0

00.0

00.0

00.0

20.3

Gastroschisis 152.4

00.0

112.5

00.0

00.0

182.6

1


50.8

00.0

225.0

00.0

00.0

91.3


00.0

00.0

00.0

00.0

111.6


19.3

112.5

00.0

179.4

162.3


235.5

4102.3

647.5

00.0

25069.6

Microcephalus 274.3

218.6

112.5

14.0

00.0

385.4


437.2

9112.5

520.2

00.0

21230.3

Omphalocele 50.8

00.0

112.5

00.0

00.0

121.7

1



New HampshireBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)







327.9

00.0

14.0

00.0

324.6

2


218.6

112.5

14.0

00.0

537.6


00.0

337.5

28.1

00.0

16323.3


00.0

225.0

00.0

00.0

233.3


00.0

00.0

00.0

00.0

50.7


00.0

112.5

00.0

00.0

202.9


00.0

337.5

00.0

00.0

476.7


00.0

112.5

00.0

00.0

131.9


19.3

225.0

28.1

00.0

324.6


00.0

00.0

00.0

00.0

162.3


00.0

00.0

00.0

00.0

20.3


00.0

00.0

00.0

00.0

50.7


00.0

00.0

00.0

00.0

131.9


218.6

337.5

312.1

00.0

15221.7

3


1074.

800.

2473.

126.

70082.


563.

391.

1262.

54.

35905.




New HampshireTrisomy Counts and Prevalence by Maternal Age 2005-2009 (Prevalence per 10,000 Live Births)New HampshireTrisomy Counts and Prevalence by Maternal Age 2005-2009 (Prevalence per 10,000 Live Births)

Age


8.02419.3

7510.7


10.8

50.7


75.6

131.9


12433.

70082.


Notes1.ICD-9 code data and active medical record abstraction used for all gastroschisis and omphalocele cases2.Includes weight =>2500 grams only3.Probable cases not included

General comments-Data for all birth conditions includes data ascertained during calendar years 2004 through 2009 for NH resident mothers.-Data for live births was obtained from the New Hampshire Department of State, Division of Vital Records Administration, Web Query Tool. Data mayvary from year to year due to the process of continuing acquisition of birth certificate information, particularly from NH residents that give birth out ofstate.-Data includes live births from birth to age 2 years, stillbirths and terminations.-Data is for confirmed cases only, following medical chart review and use of the NBDPN Guidelines.-For gastroschisis and omphalocele, cases are distinguished using active medical chart review.



New JerseyBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)New JerseyBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)







91.1

181.3

10.2

00.0

440.8

1

Anencephalus 50.2

40.5

100.7

00.0

00.0

190.3

Aniridia 90.3

10.1

30.2

00.0

00.0

140.2


111.3

231.6

40.7

00.0

571.0


111.3

684.8

112.0

00.0

1402.5


50.6

161.1

20.4

00.0

510.9


43551.9

53237.2

14527.0

581.2

180332.0

2


843.2

273.2

352.4

112.0

116.2

1632.9


81.0

100.7

40.7

00.0

310.6


20.2

30.2

00.0

00.0

70.1


172.0

282.0

50.9

00.0

901.6


475.6

1329.2

519.5

116.2

4417.8


384.5

1037.2

387.1

00.0

3486.2


293.5

533.7

152.8

00.0

1973.5


20.2

151.0

20.4

00.0

290.5


161.9

402.8

50.9

00.0

1021.8


182.1

674.7

264.8

116.2

2604.6


91.1

251.7

101.9

00.0

811.4


10011.9

20514.3

448.2

232.5

67111.9


50.6

120.8

10.2

00.0

330.6

Encephalocele 130.5

50.6

80.6

40.7

00.0

310.6

Epispadias 622.4

151.8

271.9

81.5

116.2

1162.1


652.5

131.6

332.3

20.4

00.0

1162.1


110.4

141.7

00.0

00.0

116.2

270.5

Gastroschisis 491.9

212.5

483.4

71.3

116.2

1272.3

3


451.7

232.7

241.7

81.5

00.0

1031.8


546.4

886.2

81.5

00.0

2244.0


151.8

332.3

40.7

00.0

931.7


31774.1

35949.2

16359.4

6183.5

231480.4


769.1

1289.0

356.5

00.0

3786.7


27232.4

59641.7

20438.0

581.2

235241.8

Omphalocele 210.8

242.9

141.0

40.7

00.0

651.2

3



New JerseyBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)







82898.8

108676.0

33462.2

697.4

407572.4


11213.4

1208.4

326.0

00.0

5239.3


131.6

151.0

30.6

00.0

530.9


738.7

27919.5

305.6

00.0

90716.1


192.3

584.1

203.7

116.2

1753.1


344.1

322.2

91.7

00.0

1242.2


323.8

523.6

163.0

00.0

1663.0


303.6

634.4

132.4

116.2

2544.5


172.0

523.6

50.9

116.2

1532.7


495.8

483.4

173.2

00.0

2013.6


190.7

101.2

161.1

20.4

00.0

470.8


344.1

513.6

152.8

00.0

1803.2


491.9

121.4

292.0

101.9

00.0

1041.8


161.9

181.3

30.6

00.0

561.0


20.2

70.5

10.2

00.0

190.3


141.7

161.1

50.9

00.0

581.0


48157.4

94265.9

26849.9

464.9

343361.0

4


83832.

142918.

53714.

616.

562582.


42766.

72928.

27450.

327.

287933.




New JerseyTrisomy Counts and Prevalence by Maternal Age 2005-2009 (Prevalence per 10,000 Live Births)New JerseyTrisomy Counts and Prevalence by Maternal Age 2005-2009 (Prevalence per 10,000 Live Births)

Age


6.535028.8

67111.9


100.8

190.3


332.7

581.0


121318.

562582.


Notes1.Used codes 658.80 and 762.80.2.ASD only, PFO coded separately.3.Gastroschisis coded 756.79, Omphalocele coded 756.78.4.Only confirmed cases included.

General comments-Hybrid system; passive with audit, uses ICD9-CM codes-Live births only



New YorkBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)New YorkBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)







100.5

190.7

10.1

00.0

550.5

Anencephalus 190.3

100.5

200.7

20.2

00.0

520.4

Aniridia 100.2

10.0

70.2

10.1

00.0

190.2


251.2

501.7

121.1

00.0

1571.3


70.3

451.6

80.7

14.3

1160.9


291.4

401.4

90.8

00.0

2201.8


146272.4

131645.5

49145.7

1043.3

559245.8


2434.1

1195.9

1023.5

363.3

14.3

5124.2


371.8

391.3

191.8

00.0

1401.1


30.1

10.0

00.0

00.0

220.2


412.0

471.6

60.6

00.0

2251.8


934.6

2318.0

736.8

417.3

9087.4


934.6

1414.9

676.2

14.3

6815.6


1105.5

1505.2

474.4

14.3

6485.3


211.0

120.4

60.6

00.0

780.6


562.8

582.0

141.3

00.0

2341.9


763.8

2829.7

827.6

14.3

10508.6


402.0

592.0

232.1

14.3

2922.4


26613.2

36512.6

757.0

14.3

149812.3


150.7

210.7

50.5

00.0

800.7

Encephalocele 420.7

201.0

210.7

80.7

00.0

930.8

Epispadias 941.6

522.6

451.6

50.5

00.0

2001.6


1853.1

391.9

682.4

191.8

00.0

3192.6


290.5

241.2

130.4

00.0

00.0

670.5


512.5

863.0

50.5

417.3

3142.6


1682.8

834.1

602.1

232.1

00.0

3412.8


22911.3

2518.7

676.2

313.0

9798.0


512.5

742.6

161.5

313.0

3292.7


65763.9

70947.9

26447.5

871.2

468574.8


1849.1

2157.4

434.0

313.0

7596.2


64932.2

111238.4

49746.2

1252.0

483639.6

Omphalocele 701.2

361.8

291.0

121.1

313.0

1531.3



New YorkBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)







95947.5

66523.0

29227.2

1460.7

371130.4


24111.9

2378.2

857.9

313.0

10918.9


170.8

301.0

40.4

00.0

920.8


26413.1

83328.8

12311.4

1043.3

282523.1


743.7

1394.8

323.0

14.3

5094.2


231.1

150.5

100.9

14.3

1040.9


371.8

531.8

100.9

14.3

2542.1


904.5

1053.6

262.4

28.7

5414.4


462.3

632.2

212.0

14.3

2692.2


1185.8

1043.6

615.7

14.3

5794.7


470.8

180.9

401.4

111.0

00.0

1181.0


482.4

682.4

201.9

00.0

3282.7


1752.9

482.4

682.4

181.7

00.0

3162.6


422.1

441.5

171.6

00.0

1681.4


180.9

190.7

70.7

00.0

800.7


201.0

281.0

60.6

00.0

1040.9


381.9

381.3

60.6

00.0

1451.2


83741.5

132945.9

40337.5

1252.0

547044.8


201832.

289265.

107492.

2307.

1221543.


102881.

147869.

55574.

1124.

625949.




New YorkTrisomy Counts and Prevalence by Maternal Age 2005-2009 (Prevalence per 10,000 Live Births)New YorkTrisomy Counts and Prevalence by Maternal Age 2005-2009 (Prevalence per 10,000 Live Births)

Age


7.180233.3

149812.3


321.3

1040.9


823.4

1451.2


240937.

1221543.


General comments-2009 data are provisional-NY only ascertains birth defects among live births



North CarolinaBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)North CarolinaBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)







241.6

151.4

31.6

44.5

951.5

Anencephalus 782.2

302.0

403.9

63.1

33.4

1702.7

Aniridia 20.1

50.3

10.1

00.0

00.0

80.1


291.9

212.0

31.6

11.1

1131.8


191.3

424.1

52.6

55.7

1292.0


312.1

242.3

21.0

66.8

1552.4


77351.6

36535.2

5930.7

5461.4

259840.6


1975.5

976.5

514.9

84.2

44.5

3595.6


201.3

90.9

00.0

22.3

540.8


60.4

20.2

00.0

00.0

170.3


161.1

171.6

00.0

11.1

831.3


986.5

939.0

199.9

1314.8

5698.9


644.3

494.7

189.4

78.0

3966.2


624.1

454.3

105.2

78.0

3285.1


130.9

60.6

21.0

11.1

560.9


271.8

90.9

21.0

22.3

881.4


352.3

302.9

63.1

44.5

1692.6


15810.6

13713.2

2412.5

1314.8

77412.1


80.5

131.3

52.6

11.1

550.9

Encephalocele 401.1

211.4

212.0

21.0

22.3

861.3

Epispadias 290.8

201.3

40.4

00.0

00.0

530.8


962.7

291.9

201.9

31.6

33.4

1512.4


604.0

393.8

63.1

78.0

2604.1


792.2

604.0

141.4

31.6

11.1

1572.5


18712.5

989.5

136.8

1112.5

63710.0


322.1

262.5

31.6

22.3

1692.6


40953.7

11421.5

4040.2

3169.4

178654.5


1177.8

403.9

84.2

33.4

3084.8


45830.6

31430.3

6332.8

3034.1

204932.1

Omphalocele 651.8

342.3

161.5

84.2

00.0

1231.9


52034.7

36535.2

5629.2

3640.9

212433.2


15010.0

878.4

136.8

78.0

5007.8



North CarolinaBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)







342.3

191.8

42.1

11.1

1001.6


966.4

18117.5

105.2

2933.0

103716.2


533.5

525.0

52.6

55.7

2664.2


332.2

212.0

21.0

55.7

1151.8


583.9

383.7

31.6

66.8

2283.6


1046.9

696.7

105.2

78.0

4296.7


402.7

555.3

94.7

22.3

2624.1


704.7

302.9

94.7

78.0

2564.0


361.0

161.1

222.1

52.6

22.3

811.3


362.4

323.1

52.6

33.4

1872.9


962.7

332.2

262.5

31.6

22.3

1602.5


392.6

201.9

10.5

33.4

1262.0


372.5

171.6

10.5

22.3

1091.7


231.5

151.4

21.0

11.1

801.3


372.5

262.5

105.2

22.3

1712.7


59539.8

52550.7

5830.2

4146.6

264541.4


149674.

103644.

19192.

8794.

639115.


76191.

53034.

9952.

4467.

327419.




North CarolinaTrisomy Counts and Prevalence by Maternal Age 2005-2009 (Prevalence per 10,000 Live Births)North CarolinaTrisomy Counts and Prevalence by Maternal Age 2005-2009 (Prevalence per 10,000 Live Births)

Age


8.132039.6

77412.1


232.8

801.3


718.8

1712.7


80843.

639115.




North DakotaBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)North DakotaBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)






Amniotic bands 00.0

00.0

00.0

00.0

00.0

00.0

Anencephalus 123.4

114.8

00.0

00.0

12.1

143.2

Aniridia 10.3

00.0

00.0

00.0

00.0

10.2


00.0

00.0

00.0

00.0

10.2


00.0

00.0

00.0

24.1

20.5


00.0

00.0

00.0

36.2

122.7


10148.1

00.0

235.3

76156.2

30770.2


72.0

00.0

00.0

00.0

48.2

122.7

1


00.0

00.0

00.0

12.1

30.7


00.0

00.0

00.0

00.0

10.2


00.0

00.0

00.0

00.0

30.7


114.8

00.0

00.0

918.5

5011.4


00.0

00.0

117.7

714.4

6013.7


00.0

00.0

00.0

00.0

112.5

Common truncus 00.0

00.0

00.0

00.0

24.1

20.5


114.8

00.0

00.0

12.1

92.1


00.0

00.0

00.0

00.0

00.0


00.0

00.0

00.0

36.2

122.7


00.0

00.0

117.7

12.1

358.0


114.8

00.0

00.0

12.1

81.8

Encephalocele 10.3

00.0

00.0

00.0

12.1

20.5


164.5

114.8

00.0

00.0

12.1

184.1


30.8

00.0

00.0

00.0

24.1

51.1


72.0

00.0

00.0

00.0

36.2

102.3


229.6

00.0

00.0

48.2

245.5


00.0

00.0

00.0

12.1

133.0

Hypospadias* 4726.0

127.9

00.0

00.0

622.4

5424.3

2

Microcephalus 164.5

00.0

00.0

00.0

12.1

184.1


00.0

00.0

00.0

00.0

40.9


574.1

00.0

235.3

4388.4

21248.5

3


00.0

00.0

00.0

1632.9

6214.2


00.0

00.0

00.0

24.1

92.1



North DakotaBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)







344.4

00.0

00.0

2041.1

9922.6


114.8

00.0

00.0

48.2

214.8


00.0

00.0

00.0

24.1

61.4


00.0

00.0

00.0

12.1

30.7


00.0

00.0

00.0

48.2

173.9


00.0

00.0

00.0

612.3

276.2


00.0

00.0

00.0

714.4

245.5


00.0

00.0

00.0

00.0

12.1

10.2


00.0

00.0

00.0

00.0

173.9


92.5

00.0

00.0

00.0

00.0

92.1


00.0

00.0

00.0

00.0

51.1

4


00.0

00.0

00.0

00.0

51.1


178.7

00.0

00.0

00.0

33.6

5


00.0

00.0

00.0

12.1

40.9

6


229.6

00.0

00.0

3878.1

17740.5

7


675.

1606.

566.

4866.

43716.


358.

678.

167.

2678.

22249.




North DakotaTrisomy Counts and Prevalence by Maternal Age 2005-2009 (Prevalence per 10,000 Live Births)North DakotaTrisomy Counts and Prevalence by Maternal Age 2005-2009 (Prevalence per 10,000 Live Births)

Age


6.41022.4

358.0


111.8

33.6

5


12.2

40.9

6


4469.

43716.


Notes1.State uses ICD-9 code 745.60. .61, .69 for confirmed diagnosis.We cannot distinguish 745.487 CDC/BPA codes.2.The state uses ICD-9 codes and cannot distinguish these two conditions (Epispadias, Hypospadias) often unless reported.3.Infants< 2500 grams are unable to be excluded.4.State uses ICD-9 code 746.1 for confirmed diagnosis.We cannot distinguish 746.105 and 746.106 CDC/BPA codes.5.Trisomy 13 was collected in the birth certificates up to the year 2005. Data for Trisomy 13 are for the year 2005 only. Trisomy 13 is not being colletedin the new electronic birth certificates from the year 2006 onwards.6.Trisomy 18 was collected in the birth certificates up to the year 2005. Data for Trisomy 18 are for the years 2005 through 2009. Trisomy 18 is notbeing collected in the new electronic birth certificates from the year 2006 onwards.7.State uses ICD-9 code 745.4 for confirmed diagnosis.We cannot distinguish 745.487 and 745.498 CDC/BPA codes.

General comments-Fetal Death or birth resulting in stillbirth means death prior to the complete expulsion or extraction from its mother of a product of human conception,irrespective of the duration of pregnancy. The death is indicated by the fact that after such expulsion or extraction the fetus does not breathe or show anyevidence of life such as beating of the heart, pulsation of the umbilical cord, or definite movement of voluntary muscles. North Dakota does not requirereporting of this event before 20 weeks of gestation. Although collection is attempted, reporting is poor.-North Dakota Vital Statistics implemented electronic registration of births from 2006 onwards.-The North Dakota Birth Defects Monitoring System master registry is translated to ICD-9 using ICD-10 codes from birth certificates.-There was no major methodological changes in the registry for the year 2011.



OhioBirth Defects Counts and Prevalence 2008 (Prevalence per 10,000 Live Births)OhioBirth Defects Counts and Prevalence 2008 (Prevalence per 10,000 Live Births)





American Indianor AlaskanNative Total** Notes

Cleft lip with and without cleftpalate

11910.5

145.6

57.3

39.6

00.0

1419.5

1


197.7

34.4

26.4

00.0

1187.9

2

Spina bifida withoutanencephalus

393.4

31.2

34.4

00.0

00.0

453.0

3


24818.

6887.

3129.

216.

148592.


Notes1.Cleft lip with and without cleft palate: Data pulled on 14JUL2011.2.Cleft palate without cleft lip: Includes one late reported case after lock-down of birth records. Data pulled on 14JUL2011.3.Spina bifida: Livebirths only. Includes one late reported case after lock-down of birth records. Data pulled on 05JUL2011.



OklahomaBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)OklahomaBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)







41.9

10.3

12.1

31.2

250.9

Anencephalus 473.2

41.9

41.2

24.1

62.4

632.3

Aniridia 80.5

10.5

10.3

00.0

00.0

110.4


52.4

51.4

12.1

83.1

441.6


21.0

113.2

24.1

52.0

521.9


52.4

41.2

00.0

93.5

883.3


19594.3

16046.0

2041.2

25198.5

182768.0


875.9

83.9

72.0

12.1

155.9

1184.4


10.5

20.6

00.0

20.8

150.6


10.5

00.0

00.0

20.8

110.4


41.9

41.2

12.1

52.0

441.6


136.3

154.3

12.1

259.8

2087.7


188.7

349.8

816.5

4517.7

34813.0


157.3

92.6

48.2

145.5

1365.1


21.0

10.3

12.1

31.2

281.0


62.9

10.3

12.1

41.6

542.0


52.4

164.6

48.2

124.7

1214.5


62.9

133.7

12.1

83.1

1043.9


209.7

5917.0

612.4

2610.2

31911.9


00.0

10.3

00.0

41.6

190.7

Encephalocele 181.2

41.9

30.9

12.1

20.8

291.1

Epispadias 120.8

21.0

00.0

00.0

00.0

140.5


583.9

94.4

51.4

12.1

93.5

823.1


30.2

10.5

00.0

00.0

20.8

60.2


104.8

164.6

36.2

2911.4

1736.4


312.1

41.9

20.6

12.1

62.4

441.6


2311.1

154.3

12.1

218.2

1826.8


31.5

20.6

24.1

72.7

542.0


4744.3

147.9

728.2

4937.8

55240.2


2512.1

185.2

24.1

2610.2

2027.5


8440.6

12536.0

2449.4

9336.5

106439.6

Omphalocele 483.3

104.8

82.3

00.0

52.0

712.6



OklahomaBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)







00.0

00.0

00.0

00.0

00.0


188.7

174.9

24.1

207.8

1746.5


41.9

41.2

12.1

31.2

281.0


4019.3

10831.1

612.4

14657.3

107440.0


199.2

154.3

24.1

176.7

1756.5


5828.1

8223.6

918.5

6023.5

67625.2


115.3

82.3

12.1

145.5

1063.9


136.3

164.6

36.2

114.3

1555.8


83.9

61.7

00.0

103.9

1164.3


146.8

144.0

00.0

176.7

1214.5


261.8

52.4

72.0

00.0

83.1

461.7


41.9

72.0

24.1

103.9

742.8


453.1

41.9

61.7

24.1

103.9

672.5


41.9

41.2

00.0

10.4

281.0


41.9

30.9

00.0

10.4

240.9


41.9

00.0

12.1

72.7

321.2


83.9

20.6

12.1

52.0

562.1


13665.8

16547.5

2449.4

15661.2

143253.3


20674.

34758.

4854.

25480.

268661.


10600.

17732.

2484.

12969.

137407.




OklahomaTrisomy Counts and Prevalence by Maternal Age 2005-2009 (Prevalence per 10,000 Live Births)OklahomaTrisomy Counts and Prevalence by Maternal Age 2005-2009 (Prevalence per 10,000 Live Births)

Age


7.114464.6

31911.9


73.1

321.2


177.6

562.1


22283.

268661.




Puerto RicoBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)Puerto RicoBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)






Anencephalus ..

.

.954.0

.

...

954.0

Anophthalmia/microphthalmia ..

.

.161.8

.

...

161.8

1

Anotia/microtia ..

.

.293.2

.

...

293.2

2

Aortic valve stenosis ..

.

.461.9

.

...

461.9

Atrial septal defect ..

.

.53422.6

.

...

53422.6

3


.

...

994.2

.

...

994.2

4

Bladder exstrophy ..

.

.00.0

.

...

00.0

5

Cleft lip with and without cleft palate ..

.

.2279.6

.

...

2279.6

Cleft palate without cleft lip ..

.

.1516.4

.

...

1516.4

Coarctation of aorta ..

.

.974.1

.

...

974.1

Common truncus ..

.

.190.8

.

...

190.8

Down syndrome (Trisomy 21) ..

.

.35515.0

.

...

35515.0

Ebstein anomaly ..

.

.231.0

.

...

231.0

Encephalocele ..

.

.351.5

.

...

351.5

Epispadias ..

.

.60.4

.

...

60.4

6

Gastroschisis ..

.

.1144.8

.

...

1144.8

7

Hypoplastic left heart syndrome ..

.

.552.3

.

...

552.3

Hypospadias* ..

.

.21830.9

.

...

21830.9

8

Omphalocele ..

.

.592.5

.

...

592.5

7

Patent ductus arteriosus ..

.

.64027.0

.

...

64027.0

9

Pulmonary valve atresia and stenosis ..

.

.25110.6

.

...

25110.6

Pulmonary valve atresia ..

.

.271.1

.

...

271.1

Reduction deformity, lower limbs ..

.

.351.5

.

...

351.5

Reduction deformity, upper limbs ..

.

.823.5

.

...

823.5

Spina bifida without anencephalus ..

.

.1034.4

.

...

1034.4

Tetralogy of Fallot ..

.

.883.7

.

...

883.7


.

...

140.6

.

...

140.6

Transposition of great arteries - All ..

.

.632.7

.

...

632.7

10


.

...

592.5

.

...

592.5

Tricuspid valve atresia ..

.

.341.4

.

...

341.4

Trisomy 13 (Patau syndrome) ..

.

.391.6

.

...

391.6

Trisomy 18 (Edwards syndrome) ..

.

.903.8

.

...

903.8



Puerto RicoBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)






Ventricular septal defect ..

.

.56023.7

.

...

56023.7

11

Total Live Births ..

.

.236699.

.

...

236699.

Total Male Live Births (2007-2009) ..

.

.70552.

.

...

70552.




Puerto RicoTrisomy Counts and Prevalence by Maternal Age 2005-2009 (Prevalence per 10,000 Live Births)Puerto RicoTrisomy Counts and Prevalence by Maternal Age 2005-2009 (Prevalence per 10,000 Live Births)

Age


9.614674.7

35515.0


126.1

391.6


3618.4

903.8


19545.

236699.


Notes1.Anophtalmia/microphtalmia: Only include data for 2008-2009.2.Anotia/microtia: Only include data for 2008-20093.Excludes PFO4.Only includes AV Canal.5.Bladder exstrophy: Only include data for 2008-20096.Epispadias: Only include data for 2007-20097.We used clinical diagnosis to distinguish gastroschisis and omphalocele.8.Hypospadias: Only include data for 2007-20099.Unable to exclude infants with defect last noted at <6 wks of age.10.Excludes 745.11 (DORV)11.Excludes probable cases. We can't distinguish inlet VSD from other VSD. However we exclude inlet/posterior type VSD in the presence of AV Canal.

General comments-Probable/possible diagnoses were not included.-The coding system used was ICD 9 CM-We include stillbirths and terminations (no gestational age cut off) in our counts.



Rhode IslandBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)Rhode IslandBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)






Amniotic bands 20.5

00.0

00.0

00.0

00.0

20.3

Anencephalus 30.8

00.0

00.0

00.0

00.0

30.5

Aniridia 00.0

00.0

00.0

00.0

00.0

00.0


12.0

21.6

00.0

00.0

50.8


00.0

32.4

00.0

117.7

50.8


00.0

00.0

00.0

00.0

20.3


2651.6

5039.5

518.5

470.8

23037.9


82.1

24.0

10.8

00.0

00.0

111.8


00.0

00.0

00.0

00.0

00.0


00.0

00.0

00.0

00.0

00.0


24.0

00.0

00.0

00.0

40.7


12.0

97.1

27.4

00.0

457.4


12.0

75.5

311.1

117.7

406.6


24.0

32.4

27.4

00.0

152.5

Common truncus 00.0

00.0

00.0

00.0

00.0

00.0


12.0

10.8

00.0

00.0

30.5


36.0

75.5

00.0

00.0

437.1


12.0

54.0

13.7

00.0

162.6


59.9

1310.3

311.1

00.0

8313.7


00.0

00.0

00.0

00.0

20.3

Encephalocele 20.5

00.0

00.0

00.0

00.0

20.3

Epispadias 102.7

12.0

00.0

00.0

00.0

111.8


71.9

12.0

64.7

00.0

00.0

162.6


41.1

47.9

21.6

00.0

00.0

111.8

Gastroschisis 112.9

59.9

129.5

13.7

117.7

304.9


71.9

24.0

00.0

00.0

00.0

101.6


47.9

32.4

27.4

117.7

264.3


12.0

10.8

13.7

00.0

71.2


1973.7

3961.3

322.0

00.0

21167.8

Microcephalus 112.9

12.0

21.6

27.4

00.0

172.8


2039.7

3023.7

622.2

117.7

15625.7

Omphalocele 61.6

12.0

21.6

00.0

00.0

91.5



Rhode IslandBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)







2549.6

4938.7

725.9

117.7

21936.1


24.0

1310.3

27.4

117.7

498.1


00.0

21.6

00.0

117.7

81.3


00.0

10.8

00.0

00.0

30.5


47.9

43.2

13.7

00.0

223.6


00.0

21.6

00.0

00.0

91.5


12.0

10.8

00.0

00.0

81.3


36.0

10.8

00.0

00.0

81.3


24.0

54.0

00.0

00.0

152.5


36.0

86.3

00.0

00.0

264.3


20.5

00.0

32.4

00.0

00.0

50.8


12.0

43.2

27.4

00.0

142.3


51.3

12.0

43.2

13.7

00.0

111.8


12.0

10.8

00.0

117.7

40.7


24.0

21.6

13.7

00.0

61.0


24.0

21.6

00.0

00.0

122.0


1427.8

4233.2

1244.4

117.7

21535.4


5036.

12652.

2703.

565.

60715.


2579.

6367.

1361.

286.

31137.




Rhode IslandTrisomy Counts and Prevalence by Maternal Age 2005-2009 (Prevalence per 10,000 Live Births)Rhode IslandTrisomy Counts and Prevalence by Maternal Age 2005-2009 (Prevalence per 10,000 Live Births)

Age


7.64137.9

8313.7


43.7

61.0


76.5

122.0


10809.

60715.


General comments-Includes specialty clinic data from 2009-Prenatal ascertainment of cases begins in 2009



South CarolinaBirth Defects Counts and Prevalence 2006-2009 (Prevalence per 10,000 Live Births)South CarolinaBirth Defects Counts and Prevalence 2006-2009 (Prevalence per 10,000 Live Births)






Anencephalus 272.0

192.3

145.8

00.0

00.0

612.4

Aniridia 20.1

00.0

00.0

00.0

00.0

20.1


30.4

10.4

00.0

00.0

100.4


20.2

00.0

12.5

00.0

60.2


40.5

41.7

12.5

00.0

220.9


15224.7

5328.8

723.6

00.0

44523.8

1


584.2

526.4

83.3

00.0

00.0

1204.8


40.5

00.0

00.0

00.0

90.4


20.2

00.0

00.0

00.0

20.1


60.7

31.2

00.0

00.0

160.6


415.0

218.7

512.5

220.0

1857.5


445.4

104.2

12.5

00.0

1164.7


212.6

83.3

25.0

00.0

903.6


30.4

10.4

00.0

110.0

170.7


30.4

20.8

00.0

00.0

140.6


81.0

145.8

12.5

00.0

702.8


121.5

72.9

00.0

00.0

522.1


358.6

1815.2

314.4

00.0

1249.9

2


30.4

10.4

25.0

00.0

140.6

Encephalocele 141.0

81.0

83.3

12.5

00.0

311.3


80.6

40.5

10.4

00.0

00.0

130.5

Gastroschisis 60.4

00.0

00.0

00.0

00.0

60.2


181.3

81.0

00.0

00.0

00.0

261.0


445.4

104.2

12.5

00.0

1184.8


222.7

93.7

12.5

00.0

642.6

Microcephalus 372.7

435.3

187.5

25.0

00.0

1034.2


425.2

229.2

12.5

00.0

1596.4

Omphalocele 10.1

00.0

00.0

00.0

00.0

10.0


17929.0

5127.7

620.3

114.0

44123.6

3


485.9

156.2

00.0

110.0

1355.5


101.2

41.7

00.0

00.0

251.0


254.1

2010.8

13.4

114.0

1196.4

4



South CarolinaBirth Defects Counts and Prevalence 2006-2009 (Prevalence per 10,000 Live Births)







91.1

20.8

12.5

110.0

371.5


162.0

52.1

00.0

00.0

461.9


192.3

125.0

00.0

110.0

612.5


202.5

62.5

00.0

00.0

602.4


172.1

62.5

12.5

00.0

732.9


394.8

125.0

12.5

00.0

994.0


283.4

83.3

12.5

110.0

1064.3


392.8

111.4

31.2

00.0

110.0

552.2


81.0

52.1

00.0

00.0

210.8


61.5

10.8

00.0

00.0

151.2

5


82.0

43.4

00.0

00.0

272.2

6


25130.8

12150.4

922.5

220.0

81132.7


81439.

24022.

3998.

999.

250776.




South CarolinaTrisomy Counts and Prevalence by Maternal Age 2006-2009 (Prevalence per 10,000 Live Births)South CarolinaTrisomy Counts and Prevalence by Maternal Age 2006-2009 (Prevalence per 10,000 Live Births)

Age


5.86044.6

1249.9

2


32.2

151.2

5


107.4

272.2

6


13447.

124654.


Notes1.Atrial Septal Defect was dropped beginning in 20092.Down Syndrome was collected beginning in 20083.Patent Ductus Arteriosus was dropped beginning in 20094.Pyloric Stenosis was dropped beginning in 20095.Trisomy 13 was collected beginning in 20086.Trisomy 18 was collected beginning in 2008



TennesseeBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)TennesseeBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)






Anencephalus 351.2

111.3

82.1

00.0

00.0

561.3

Aniridia 70.2

00.0

00.0

00.0

00.0

70.2


161.8

30.8

11.2

00.0

411.0


20.2

71.8

11.2

00.0

280.7


50.6

82.1

00.0

00.0

852.0


1133130.3

27471.0

4758.4

116.0

392193.3


1234.3

343.9

102.6

11.2

00.0

1684.0

1


70.8

30.8

33.7

00.0

310.7


40.5

00.0

00.0

00.0

220.5


111.3

30.8

00.0

116.0

741.8


606.9

359.1

11.2

232.1

47311.3


465.3

205.2

89.9

232.1

3207.6


495.6

277.0

11.2

00.0

2776.6


30.3

30.8

11.2

00.0

441.0


202.3

41.0

56.2

00.0

1032.5


394.5

277.0

33.7

00.0

3157.5


293.3

143.6

45.0

00.0

1533.6


11212.9

6015.5

911.2

00.0

60514.4


70.8

41.0

11.2

00.0

360.9

Encephalocele 351.2

101.1

112.8

00.0

00.0

561.3

Epispadias 441.5

101.1

20.5

00.0

00.0

561.3


812.9

131.5

92.3

00.0

00.0

1032.5


551.9

333.8

00.0

00.0

00.0

882.1


232.6

194.9

45.0

00.0

2245.3

2


792.8

434.9

82.1

00.0

00.0

1313.1


859.8

379.6

33.7

00.0

3037.2


343.9

133.4

00.0

00.0

1383.3


489110.6

6633.6

2253.3

263.9

2281106.2


11713.5

4411.4

56.2

00.0

47711.3


17620.2

8722.5

2328.6

116.0

118628.2

Omphalocele 792.8

374.3

112.8

00.0

00.0

1273.0

3


69379.7

21455.4

3341.0

116.0

252960.2

4



TennesseeBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)







10311.8

297.5

56.2

232.1

44710.6


172.0

82.1

00.0

00.0

701.7


23026.4

18347.4

1012.4

116.0

182943.5


475.4

246.2

33.7

00.0

2475.9


252.9

71.8

22.5

00.0

882.1


202.3

123.1

22.5

00.0

912.2


515.9

194.9

45.0

00.0

2145.1


293.3

297.5

11.2

00.0

1814.3


526.0

194.9

56.2

00.0

2536.0


546.2

246.2

45.0

00.0

2656.3

5


672.4

192.2

82.1

33.7

00.0

972.3


70.8

10.3

00.0

00.0

491.2

6


70.8

10.3

00.0

00.0

491.2

6


131.5

30.8

11.2

00.0

340.8


131.5

92.3

00.0

00.0

681.6


38644.4

18247.1

2126.1

116.0

193746.1

7


86969.

38615.

8043.

624.

420278.


44223.

19659.

4131.

313.

214748.




TennesseeTrisomy Counts and Prevalence by Maternal Age 2005-2009 (Prevalence per 10,000 Live Births)TennesseeTrisomy Counts and Prevalence by Maternal Age 2005-2009 (Prevalence per 10,000 Live Births)

Age


9.425058.6

60514.4


92.1

340.8


225.2

681.6


42668.

420278.


Notes1.TN does not use the new CDC/BPA codes and cannot distinguish 745.487 from other VSD.2.ICD-9 Procedure Code = 54.713.ICD-9 Procedure Code not equal to 54.714.Birthweight = 2500 grams.5.TN does not use the new CDC/BPA codes: information includes the entire range.6.TN does not use the new CDC/BPA codes and cases with 746.106 are included within this category7.Includes probable cases. TN does not use the new CDC/BPA codes and cannot distinguish 745.487.



TexasBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)TexasBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)







251.1

660.7

40.6

12.8

1540.8

Anencephalus 1341.9

431.9

3013.0

141.9

12.8

5032.5

Aniridia 80.1

20.1

90.1

10.1

00.0

200.1


562.5

3433.4

162.2

411.1

6353.2


341.5

4754.8

253.5

513.9

6733.4


341.5

2292.3

101.4

12.8

4602.3


156569.3

650565.2

34948.2

2466.7

1293864.7


3485.1

1094.8

4004.0

152.1

12.8

8764.4


120.5

830.8

71.0

25.6

1480.7


20.1

80.1

20.3

00.0

290.1


281.2

1191.2

101.4

00.0

2551.3


1556.9

114411.5

689.4

616.7

213110.7


1054.7

5835.8

476.5

00.0

12236.1


823.6

5275.3

253.5

38.3

10405.2


140.6

750.8

40.6

00.0

1430.7


572.5

1821.8

81.1

00.0

3972.0


482.1

4474.5

354.8

12.8

8814.4


512.3

2902.9

141.9

25.6

5642.8


2219.8

151015.1

7710.6

411.1

269113.5


50.2

700.7

71.0

00.0

1240.6

Encephalocele 510.7

241.1

1121.1

30.4

00.0

1961.0

Epispadias 791.1

251.1

710.7

81.1

00.0

1830.9


1682.4

321.4

2002.0

121.7

25.6

4172.1


150.2

100.4

140.1

10.1

00.0

400.2


924.1

6346.4

182.5

25.6

11615.8


1211.8

582.6

870.9

141.9

25.6

2851.4


1617.1

7327.3

202.8

25.6

14107.1


522.3

1911.9

81.1

12.8

4192.1


78468.2

194738.3

19652.8

1474.9

586657.4


34115.1

116211.6

719.8

719.4

223611.2


71431.6

470547.1

32845.3

1541.7

896344.8

Omphalocele 1372.0

552.4

1952.0

101.4

25.6

4082.0



TexasBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)







121153.6

612961.4

35348.7

1644.5

1147857.4

1


24110.7

106610.7

415.7

513.9

19849.9


311.4

1631.6

60.8

00.0

2891.4

2


1948.6

216721.7

314.3

616.7

393219.7


994.4

5645.7

324.4

38.3

10785.4


622.7

1781.8

81.1

00.0

4012.0


974.3

3933.9

192.6

719.4

8224.1


1275.6

6146.2

283.9

411.1

11765.9


572.5

4154.2

81.1

25.6

7263.6


1094.8

3623.6

354.8

38.3

7924.0


931.4

200.9

2292.3

101.4

12.8

3551.8


632.8

3523.5

273.7

25.6

7143.6

3


2563.7

642.8

3533.5

263.6

25.6

7033.5

4


492.2

1921.9

141.9

00.0

3671.8


221.0

750.8

71.0

00.0

1550.8


291.3

1091.1

101.4

00.0

2251.1


662.9

2602.6

233.2

12.8

5442.7


106547.2

689969.1

33846.6

1952.8

1228961.5

5


225737.

997993.

72455.

3599.

1999140.


114886.

508998.

37139.

1868.

1022134.




TexasTrisomy Counts and Prevalence by Maternal Age 2005-2009 (Prevalence per 10,000 Live Births)TexasTrisomy Counts and Prevalence by Maternal Age 2005-2009 (Prevalence per 10,000 Live Births)

Age


8.6117050.5

269113.5


652.8

2251.1


24610.6

5442.7


231538.

1999140.


Notes1.Patent ductus arteriosus: In Texas, coding of patent ductus arteriosus (PDA) is based on the following criteria. PDA is never coded if the infant wasless than 36 weeks gestation and less than 12 weeks of age at diagnosis, or if the infant was on prostaglandin. If the infant was greater than or equal to 36weeks gestation and less than 12 weeks of age at diagnosis, PDA is coded only if there is another reportable defect present, or if there was amedical/surgical intervention for this problem. PDA is always coded if the infant is greater than or equal to 12 weeks of age at diagnosis, unless the infantwas on prostaglandin.2.Pulmonary valve atresia for CCHD: Excludes TOF.3.Transposition of the great arteries: As Texas does not use the new CDC BPA codes and the exclusion criteria has '745.180', those defects of 'doubleoutlet right ventricle' which we have coded into 745.180 will not be counted in this defect.4.Transposition of the great arteries for CCHD: Data are provisional.5.Ventricular Septal Defect: We are unable to distinguish inlet VSD from other types of VSD.

General comments-Our case definition includes livebirths, stillbirths, and terminations at any length of gestation and any birthweight.-Texas only reports confirmed and definite diagnoses for any defect reported. Possible/probable cases are not given.-Texas uses the CDC/BPA coding system, but does not use the new CDC/BPA codes.



UtahBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)UtahBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)







00.0

40.9

00.0

00.0

291.1

Anencephalus 582.8

14.1

112.5

11.2

13.0

742.7

Aniridia 10.0

00.0

00.0

00.0

00.0

10.0


00.0

40.9

00.0

00.0

140.5


00.0

214.9

00.0

00.0

712.6


00.0

204.6

78.1

25.9

1324.9


1457.7

17139.6

3945.4

1647.3

101737.7


1165.5

28.2

255.8

55.8

25.9

1505.6


28.2

20.5

00.0

00.0

170.6


00.0

00.0

11.2

00.0

50.2


00.0

20.5

00.0

00.0

190.7


416.5

419.5

55.8

38.9

35413.1


00.0

235.3

1112.8

617.7

1826.8


416.5

327.4

44.7

25.9

2529.4


00.0

10.2

00.0

00.0

170.6


14.1

71.6

00.0

13.0

752.8


00.0

61.4

11.2

38.9

441.6


624.7

8419.5

1011.6

411.8

39414.6


00.0

10.2

00.0

13.0

271.0

Encephalocele 180.9

00.0

61.4

00.0

13.0

261.0

Epispadias 10.0

00.0

00.0

00.0

13.0

30.1


562.7

00.0

184.2

44.7

13.0

803.0

Gastroschisis 934.4

416.5

276.3

1214.0

514.8

1415.2


371.8

00.0

20.5

78.1

00.0

461.7


520.6

133.0

22.3

13.0

1144.2


28.2

122.8

22.3

00.0

973.6


14110.8

4520.6

1942.2

634.9

90265.1


28.2

358.1

33.5

411.8

1766.5


28.2

204.6

33.5

00.0

1726.4

Omphalocele 592.8

312.4

102.3

22.3

00.0

752.8


520.6

5312.3

1719.8

411.8

38114.1


00.0

71.6

44.7

00.0

371.4



UtahBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)







14.1

8118.8

67.0

411.8

41115.2


28.2

204.6

22.3

25.9

1104.1


14.1

61.4

55.8

00.0

481.8


00.0

307.0

55.8

13.0

1505.6


28.2

173.9

33.5

00.0

913.4


14.1

184.2

11.2

25.9

1154.3


28.2

163.7

55.8

25.9

943.5


211.0

00.0

71.6

22.3

25.9

321.2


28.2

225.1

44.7

13.0

1204.5


502.4

00.0

81.9

22.3

00.0

602.2


00.0

61.4

33.5

00.0

311.2


28.2

184.2

11.2

00.0

572.1


416.5

163.7

22.3

13.0

963.6


1457.7

11125.7

1820.9

1029.6

62523.2


2426.

43141.

8597.

3381.

269509.


1264.

21890.

4505.

1718.

138538.




UtahTrisomy Counts and Prevalence by Maternal Age 2005-2009 (Prevalence per 10,000 Live Births)UtahTrisomy Counts and Prevalence by Maternal Age 2005-2009 (Prevalence per 10,000 Live Births)

Age


9.117168.0

39414.6


197.6

572.1


3915.5

963.6


25161.

269509.




VirginiaBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)VirginiaBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)






Anencephalus 280.9

30.3

101.4

61.7

00.0

531.0

Aniridia 60.2

00.0

10.1

00.0

00.0

80.2


50.4

40.6

10.3

00.0

340.6


90.8

101.4

30.8

00.0

490.9


50.4

71.0

30.8

00.0

881.7


103490.3

797113.5

481133.2

565.8

5854110.3


1053.4

554.8

131.9

82.2

00.0

2013.8


70.6

10.1

30.8

00.0

410.8


20.2

00.0

10.3

00.0

160.3


121.0

60.9

20.6

00.0

911.7


443.8

578.1

277.5

00.0

4899.2


383.3

273.8

339.1

00.0

3656.9


322.8

202.8

113.0

00.0

2815.3


80.7

50.7

51.4

00.0

350.7


181.6

50.7

30.8

00.0

601.1


201.7

355.0

195.3

113.2

2975.6


383.3

182.6

30.8

00.0

1462.7


1129.8

10014.2

3810.5

113.2

68312.9


90.8

40.6

51.4

00.0

450.8

Encephalocele 120.4

40.3

40.6

20.6

00.0

260.5

Epispadias 351.1

121.0

40.6

20.6

00.0

571.1


802.6

282.4

91.3

30.8

00.0

1372.6


170.6

201.7

20.3

00.0

00.0

450.8

Gastroschisis 40.1

10.1

20.3

00.0

00.0

70.1


702.3

282.4

71.0

61.7

00.0

1232.3


756.6

304.3

123.3

00.0

3065.8


191.7

111.6

30.8

00.0

1031.9


26044.9

9225.5

7540.5

127.9

150455.3


504.4

375.3

195.3

00.0

2785.2


15213.3

11416.2

9827.1

00.0

121622.9

Omphalocele 20.1

20.2

10.1

00.0

00.0

60.1


1613140.9

836119.0

484134.1

565.8

6839128.8



VirginiaBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)







13712.0

7210.3

5715.8

00.0

66312.5


161.4

81.1

51.4

00.0

631.2


968.4

7210.3

154.2

339.5

77214.5


332.9

223.1

61.7

00.0

2104.0


171.5

30.4

30.8

113.2

671.3


242.1

121.7

51.4

00.0

1322.5


282.4

162.3

61.7

00.0

1623.1


453.9

273.8

41.1

00.0

2414.5


494.3

233.3

164.4

113.2

2334.4


403.5

243.4

143.9

00.0

2885.4


782.6

141.2

101.4

61.7

00.0

1252.4


121.0

40.6

51.4

00.0

551.0


50.4

91.3

10.3

00.0

400.8


131.1

60.9

82.2

00.0

761.4


37833.0

35650.7

17749.0

339.5

268550.6


114481.

70231.

36102.

760.

530936.


57923.

36118.

18518.

359.

271762.




VirginiaTrisomy Counts and Prevalence by Maternal Age 2005-2009 (Prevalence per 10,000 Live Births)VirginiaTrisomy Counts and Prevalence by Maternal Age 2005-2009 (Prevalence per 10,000 Live Births)

Age


7.028633.0

68312.9


111.3

400.8


313.6

761.4


86753.

530936.




West VirginiaBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)West VirginiaBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)






Anencephalus 161.7

00.0

00.0

00.0

00.0

171.7

Aniridia 00.0

00.0

00.0

00.0

00.0

00.0


00.0

00.0

00.0

00.0

30.3


00.0

00.0

00.0

00.0

50.5


00.0

00.0

00.0

00.0

111.1


1233.8

217.1

334.6

00.0

75375.8


212.3

00.0

00.0

00.0

00.0

232.3


00.0

00.0

00.0

00.0

30.3


00.0

00.0

00.0

00.0

20.2


00.0

00.0

00.0

00.0

50.5


12.8

00.0

111.5

00.0

353.5


12.8

00.0

111.5

00.0

525.2


12.8

00.0

00.0

00.0

252.5


12.8

00.0

00.0

00.0

373.7


00.0

00.0

00.0

00.0

30.3


00.0

00.0

00.0

00.0

131.3


12.8

00.0

00.0

00.0

171.7


25.6

00.0

00.0

00.0

727.3


00.0

00.0

00.0

00.0

60.6

Encephalocele 40.4

00.0

00.0

00.0

00.0

50.5

Epispadias 40.4

00.0

00.0

00.0

00.0

50.5


101.1

00.0

00.0

00.0

00.0

141.4


141.5

00.0

00.0

00.0

00.0

161.6


101.1

25.6

00.0

00.0

00.0

151.5


00.0

00.0

00.0

00.0

282.8


12.8

00.0

00.0

00.0

171.7


527.7

00.0

00.0

00.0

19839.9

Microcephalus 222.4

12.8

00.0

00.0

00.0

303.0


12.8

18.6

00.0

00.0

666.6


925.4

00.0

00.0

00.0

21121.2

1


00.0

00.0

00.0

00.0

303.0


00.0

00.0

00.0

00.0

101.0



West VirginiaBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)







12.8

00.0

00.0

00.0

798.0


12.8

18.6

00.0

00.0

272.7


00.0

00.0

00.0

00.0

80.8


12.8

00.0

00.0

00.0

121.2


00.0

00.0

00.0

00.0

303.0


00.0

00.0

00.0

00.0

333.3


12.8

18.6

00.0

00.0

363.6


30.3

00.0

00.0

00.0

00.0

60.6


00.0

00.0

00.0

00.0

323.2


101.1

00.0

00.0

00.0

00.0

151.5


00.0

00.0

00.0

00.0

131.3


00.0

00.0

00.0

00.0

101.0


00.0

00.0

00.0

00.0

111.1


38.5

00.0

111.5

00.0

22722.9


3550.

1167.

867.

119.

99295.


1807.

581.

466.

51.

49662.




West VirginiaTrisomy Counts and Prevalence by Maternal Age 2005-2009 (Prevalence per 10,000 Live Births)West VirginiaTrisomy Counts and Prevalence by Maternal Age 2005-2009 (Prevalence per 10,000 Live Births)

Age


5.01722.5

727.3


11.3

101.0


34.0

111.1


7559.

99295.


Notes1.Includes only births =>2500 grams or =>36 wks gestation.

General comments-Birth defects defined by ICD-9 coding.-No metholologic changes during this period.-Probable cases are included.-Stillbirths and terminations per birth defect are not collected.



WisconsinBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)WisconsinBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)






Anencephalus 371.5

51.4

82.4

32.2

00.0

561.7

Aniridia 20.1

30.9

00.0

00.0

00.0

50.1


51.4

10.3

10.7

00.0

210.6


10.3

123.6

00.0

00.0

310.9


00.0

10.3

10.7

11.9

210.6


13137.6

11534.5

3525.2

4380.0

125737.0


471.9

72.0

30.9

10.7

00.0

581.7


00.0

00.0

00.0

11.9

40.1


00.0

00.0

00.0

00.0

70.2


20.6

61.8

10.7

00.0

451.3


267.5

319.3

85.8

814.9

3059.0


133.7

144.2

75.0

35.6

1995.9


72.0

82.4

10.7

00.0

601.8


20.6

30.9

00.0

00.0

210.6


41.1

10.3

00.0

00.0

280.8


41.1

206.0

42.9

00.0

2056.0


72.0

92.7

10.7

11.9

591.7


298.3

5817.4

2719.5

611.2

43112.7


00.0

20.6

10.7

11.9

90.3

Encephalocele 100.4

20.6

00.0

10.7

11.9

140.4

Epispadias 220.9

61.7

20.6

10.7

00.0

310.9


552.2

51.4

41.2

21.4

00.0

661.9


200.8

82.3

30.9

00.0

35.6

341.0


120.5

41.1

20.6

21.4

00.0

200.6


236.6

133.9

32.2

00.0

1193.5


133.7

30.9

21.4

00.0

621.8


12370.1

5834.1

1318.4

1140.6

118068.0

Microcephalus 331.3

82.3

61.8

21.4

00.0

491.4


3911.2

3711.1

2618.7

1324.2

60217.7


11533.0

10030.0

3021.6

2444.7

96628.5


185.2

123.6

53.6

47.4

1103.2


10.3

20.6

10.7

00.0

120.4



WisconsinBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)







00.0

00.0

00.0

00.0

30.1


61.7

92.7

32.2

11.9

1053.1


41.1

41.2

21.4

00.0

391.1


102.9

92.7

42.9

35.6

912.7


61.7

92.7

53.6

11.9

1103.2


102.9

92.7

21.4

11.9

1002.9


133.7

113.3

21.4

11.9

812.4


40.2

00.0

10.3

00.0

00.0

50.1


51.4

123.6

10.7

11.9

651.9


331.3

20.6

51.5

10.7

11.9

421.2


41.1

20.6

10.7

00.0

220.6


00.0

10.3

00.0

00.0

20.1


20.6

30.9

10.7

00.0

260.8


61.7

72.1

10.7

00.0

722.1


5616.1

11534.5

3525.2

2139.1

85425.2

1


34819.

33317.

13874.

5373.

339341.


17551.

16984.

7062.

2708.

173652.




WisconsinTrisomy Counts and Prevalence by Maternal Age 2005-2009 (Prevalence per 10,000 Live Births)WisconsinTrisomy Counts and Prevalence by Maternal Age 2005-2009 (Prevalence per 10,000 Live Births)

Age


7.520646.6

42612.6


40.9

210.6


163.6

391.1


44200.

339341.


Notes1.Hospital practice in coding is not known.

General comments-Anencephaly, Spina Bifida, Down Syndrome, Trisomy 13, and Trisomy 18 data include livebirths and stillbirths (although trisomy data in the maternal agetable include only livebirths). Data for all other defects include only livebirths.-As in the past, Wisconsin used its linked birth-hospital discharge records. Live births that were not linked to a newborn discharge record are notincluded. Since the discharge records are only available from Wisconsin hospitals, only Wisconsin resident births occurring in Wisconsin hospitals areincluded.-Questions? [email protected] discharge records include a primary diagnosis and up to eight other diagnoses; all were scanned for the conditions. The diagnoses are ICD-9 coded.



Department of DefenseBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)Department of DefenseBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)






Anencephalus 200.6

81.0

61.0

31.2

00.0

380.7

1

Aniridia 80.2

00.0

00.0

00.0

00.0

80.1


222.7

111.8

52.0

22.0

1061.9


111.4

142.3

41.6

33.0

1041.9


151.9

162.6

72.9

54.9

1943.5


69686.1

47276.8

16366.4

6463.3

433278.7

2


2025.6

658.0

406.5

93.7

44.0

3265.9

3


91.1

71.1

20.8

00.0

581.1


20.2

20.3

10.4

00.0

210.4


172.1

132.1

31.2

11.0

1472.7


577.1

609.8

2711.0

65.9

62511.4


546.7

6911.2

239.4

54.9

59910.9


668.2

528.5

156.1

98.9

4768.6


131.6

132.1

52.0

33.0

1112.0


263.2

294.7

83.3

11.0

1803.3


8210.1

11118.1

3915.9

2524.7

102418.6


334.1

233.7

104.1

11.0

2304.2


11113.7

9014.6

3514.3

87.9

78614.3

1


91.1

50.8

31.2

33.0

621.1

Encephalocele 411.1

111.4

132.1

41.6

44.0

741.3

Epispadias* 512.7

153.7

72.2

21.6

11.9

772.7


952.6

192.4

132.1

52.0

11.0

1352.5


260.7

60.7

20.3

00.0

00.0

360.7


1514.2

364.5

264.2

135.3

76.9

2454.4


9912.3

467.5

166.5

1110.9

55610.1


435.3

274.4

93.7

76.9

2574.7


38493.5

21367.7

12095.0

3975.2

273996.8


9511.8

487.8

3112.6

76.9

55510.1


25731.8

26843.6

9639.1

4544.5

223140.5


21226.2

11017.9

3614.7

2221.7

107119.5


243.0

162.6

72.9

33.0

1422.6


9111.3

14523.6

2811.4

3736.6

134424.4



Department of DefenseBirth Defects Counts and Prevalence 2005-2009 (Prevalence per 10,000 Live Births)







364.5

243.9

208.1

33.0

3095.6


243.0

91.5

41.6

44.0

1362.5


162.0

213.4

83.3

22.0

1643.0


202.5

335.4

114.5

65.9

2825.1


243.0

264.2

83.3

65.9

2544.6

1


485.9

365.9

239.4

98.9

3456.3


501.4

131.6

132.1

52.0

00.0

851.5


374.6

376.0

176.9

33.0

3105.6


1383.8

232.8

193.1

145.7

22.0

1993.6


151.9

30.5

10.4

11.0

761.4


172.1

71.1

10.4

00.0

751.4

1


111.4

132.1

52.0

00.0

981.8

1


47558.8

43270.3

14960.7

7170.2

388270.5

4


80801.

61447.

24552.

10116.

550562.


41071.

31446.

12636.

5184.

282914.

*Hypospadias and Epispadias: prevalence per 10,000 male live births**Total includes unknown race



Department of DefenseTrisomy Counts and Prevalence by Maternal Age 2005-2009 (Prevalence per 10,000 Live Births)Department of DefenseTrisomy Counts and Prevalence by Maternal Age 2005-2009 (Prevalence per 10,000 Live Births)

Age


10.525450.7

78614.3

1


153.0

751.4

1


367.2

981.8

1


50143.

550562.


Notes1.DoD Registry only captures livebirths2.DoD Registry relies on ICD-9-CM codes and cannot differentiate PFO3.DoD Registry relies on ICD-9-CM codes and cannot distinguish 745.4874.All ICD-9-CM coded cases that meet DoD Registry case criteria are included. DoD Registry relies on ICD-9-CM codes and cannot distinguish745.487

General comments-Criteria for a case: One diagnosis from institutional records, or 2 diagnoses from professional encounter records-Infants that appear as multiples of same gender are excluded from analysis-Race/Ethnicity for the DoD Birth and Infant Health Registry is based on the military parent through whom the infant receives military health carebenefits. This may be the infants' mother or father.



STATE BIRTH DEFECTS SURVEILLANCE

PROGRAM DIRECTORY

Updated September 2012

Prepared by the National Center on Birth Defects and Developmental Disabilities, Centers for Disease

Control and Prevention

Acknowledgement: State birth defects program directors provided the information for the directory.

Their names can be found under the “contact” section of each state profile.

STATE BIRTH DEFECTS SURVEILLANCE PROGRAM DIRECTORY S121


Alabama

Program status: No surveillance program

Contacts

Cindy Ashley, RN, BSN

Alabama Newborn Screening Program

201 Monroe Street

Montgomery, Alabama, 36104

Phone: 334-206-2971 Fax: 334-206-3791

E-mail: [email protected]

Rachel Montgomery, RN, BSN

Alabama Newborn Screening Program

201 Monroe Street

Montgomery, Alabama, 36104

Phone: 334-206-5955 Fax: 334-206-3063

E-mail: Rachel.Montgomery.adph.state.al.us

Alaska

Alaska Birth Defects Registry (ABDR)

Purpose: Surveillance, Research

Partner: Local Health Departments, Universities, Hospitals, Community

Nursing Services, Environmental Agencies/Organizations, Early

Childhood Prevention Programs, Advocacy Groups

Program status: Currently collecting data

Start year: 1996

Earliest year of available data: 1996

Organizational location: Department of Health and Social Services,

Division of Public Health, Section of Women’s, Children’s and Family

Health

Population covered annually: 11,000

Statewide: Yes

Current legislation or rule: 7 AAC 27.012

Legislation year enacted: 1996

Case Definition

Outcomes covered: ICD-9 Codes 237.7, 243, 255.2, 270, 271, 277, 279,

282, 284.0, 331, 334, 335, 343, 359, 362.74, 389, 740-760, 760.71

Pregnancy outcome: Live Births (all gestational ages and birth weights)

Age: Birth to age six

Residence: In and out of state births to Alaska residents

Surveillance Methods

Case ascertainment: Passive case ascertainment, Population based,

Passive case ascertainment with case verification of selected conditions

including FAS and NTDs

Vital Records: Birth certificates

Other state based registries: Programs for children with special needs,

Newborn hearing screening program, Newborn metabolic screening

program, genetics clinics, specialty clinics (heart, cleft lip/palate,

neurodevelopmental), MIMR (FIMR), public health nursing

Delivery hospitals: Reports are generated by the health information

management departments, within hospitals and health care facilities, for

any child encountered with a reportable ICD-9 code.

Pediatric & tertiary care hospitals: Disease index or discharge index,

Reports are generated by the health information management

departments, within hospitals and health care facilities, for any child

encountered with a reportable ICD-9 code.

Third party payers: Medicaid databases, Indian health services

Other specialty facilities: Genetic counseling/clinical genetics facilities

Other sources: Physician reports

Case Ascertainment

Conditions warranting chart review in newborn period: Any chart with

an ICD-9 code of 760.71 and other birth defects as selected for review by

the ABDR Program Manager.

Coding: ICD-9-CM

Data Collected

Infant/fetus: Identification information (name, address, date-of-birth,

etc.), Demographic information (race/ethnicity, sex, etc.), Birth

measurements (weight, gestation, Apgars, etc.), Birth defect diagnostic

information

Data Collection Methods and Storage

Data Collection: Printed abstract/report filled out by staff, Printed

abstract/report submitted by other agencies (hospitals, etc.), Electronic

file/report filled out by staff at facility (laptop, web-based, etc.),

Electronic file/report submitted by other agencies (hospitals, etc.)

Database storage/management: Access

Data Analysis

Data analysis software: Epi-Info, SPSS, SAS, Access

Quality assurance: Validity checks, Re-abstraction of cases, Double-

checking of assigned codes, Comparison/verification between multiple

data sources, Timeliness

Data use and analysis: Routine statistical monitoring, Public health

program evaluation, Baseline rates, Rates by demographic and other

variables, Time trends, Epidemiologic studies (using only program data),

Needs assessment, Service delivery, Grant proposals, Education/public

awareness, Prevention projects

System Integration

System links: Link case finding data to final birth file

Funding

Funding Source: 80% General state funds, 20% MCH funds

Other

Web site: www.epi.alaska.gov/mchepi/ABDR

Surveillance reports on file: See website

Contacts

Jennifer A. Bisson

State of Alaska, Division of Public Health

3601 C Street, Suite 358

Anchorage, AK, 99503

Phone: 907-269-8097




Arizona

Arizona Birth Defects Monitoring Program (ABDMP)

Purpose: Surveillance, Referral to Services, Referral to

Prevention/Intervention

Partner: Local Health Departments, Universities, Hospitals, Early



Start year: 1986


Organizational location: Department of Health (Bureau of Public Health

Statistics/Office of Health Registries)

Population covered annually: 87,053 live births in AZ to AZ residents,

2010

Statewide: Yes

Current legislation or rule:

Statute- www.azleg.state.az.us/ars/36/00133.htm

Rule- www.azsos.gov/public_services/Title_09/9-04.htm Effective 1991.


Case Definition

Outcomes covered: Major birth defects and genetic diseases, as defined

by the BPA/MACDP codes. Covered conditions vary by year of birth.

Pregnancy outcome: Live Births (all gestational ages and birth weights),

Fetal deaths - stillbirths, spontaneous abortions, etc. (20 weeks gestation

and greater, stillbirths with a fetal death certificate can be of any

gestational age or weight), Terminations are not included in the electronic

database.

Age: Up to one year after delivery. If the nature of a defect diagnosed in

the first year of life is more precisely diagnosed later in the child’s life,

and this information is contained in the chart at the time of our review

(which occurs 2-3 years after the child’s birth or fetal death), then the

more precise diagnosis is used.

Residence: Cases are born in Arizona and have an Arizona abstract

indicating mother's residence in AZ


Case ascertainment: Active case ascertainment, Population based, 1986-

2004: 44 categories; 2005-2009: 31 categories; 2010+: 32 categories of

defects.

Vital Records: Birth certificates, Fetal death certificates

Other state based registries: Programs for children with special needs

Delivery hospitals: Disease index or discharge index, Discharge

summaries, Mother's chart for stillborns


Discharge summaries, Mother's chart for stillborns

Third party payers: Indian Health Service

Other specialty facilities: Prenatal diagnostic facilities (ultrasound, etc.),

Cytogenetic laboratories, Genetic counseling/clinical genetics facilities

Case Ascertainment

Conditions warranting chart review in newborn period: Any chart

within a narrowed list of ICD9-CM codes between 740-759, Any chart

with selected procedure codes, Any chart with selected defects or medical

conditions (e.g., abnormal facies, congenital heart disease), All stillborn

infants, All neonatal deaths, Some prenatally diagnosed or suspected

cases

Conditions warranting chart review beyond the newborn period: Any

infant with a codable defect

Coding: CDC coding system based on BPA

Data Collected



measurements (weight, gestation, etc.), Tests and procedures, Birth defect

diagnostic information

Mother: Identification information (name, address, date-of-birth, etc.),

Demographic information (race/ethnicity, sex, etc.), Gravidity/parity,

Illnesses/conditions, Prenatal diagnostic information, Pregnancy/delivery

complications, Maternal risk factors, Family history

Father: Identification information (name, address, date-of-birth, etc.),

Demographic information (race/ethnicity, sex, etc.), Family history


Data Collection: Printed abstract/report filled out by staff

Database storage/management: Access, Oracle

Data Analysis

Data analysis software: SAS, Access

Quality assurance: Validity checks, Double-checking of assigned codes,

Comparison/verification between multiple data sources, Clinical review,

Timeliness



variables, Monitoring outbreaks and cluster investigation, Time trends,

Epidemiologic studies (using only program data), Identification of

potential cases for other epidemiologic studies, Service delivery, Referral,

Grant proposals, Education/public awareness, Prevention projects

System Integration

System links: Link to other state registries/databases, Link case finding

data to final birth file

Funding

Funding Source: 14.5% general state funds, 16.5% MCH funds, and

69% CDC Cooperative grant funds

Other

Web site: http://www.azdhs.gov/phs/phstats/bdr/index.htm

Surveillance reports on file: Same as Above

Contacts

Timothy J. Flood, M.D.

Arizona Department of Health Services

150 North 18th Ave., Ste. 550

Phoenix, AZ, 85007

Phone: 602-542-7331 Fax: 602-364-0082


Dianna Contreras

Arizona Department of Health Services

150 North 18th Ave., Ste. 550

Phoenix, AZ, 85007

Phone: 602-542-7335 Fax: 602-542-7447




http://www.azsos.gov/public_services/Title_09/9-04.htm

Arkansas

Arkansas Reproductive Health Monitoring System (ARHMS)

Purpose: Surveillance, Research, Referral to Prevention/Intervention

Partner: Local Health Departments, Universities, Hospitals, Advocacy

Groups, Legislators


Start year: 1980


Organizational location: University, Arkansas Children's Hospital


Statewide: Yes

Current legislation or rule: Senate Bill Act 214


Case Definition

Outcomes covered: Major structural birth defects


Fetal deaths - stillbirths, spontaneous abortions, etc. (all gestational ages),

Elective Terminations (all gestational ages)

Age: Two years after delivery

Residence: In and out of state births to state residents


Case ascertainment: Active case ascertainment, Population based



summaries, Obstetrics logs (i.e., labor & delivery), Regular nursery logs,

ICU/NICU logs or charts


Discharge summaries, ICU/NICU logs or charts, Specialty outpatient

clinics


Genetic counseling/clinical genetics facilities


Case Ascertainment


a ICD9-CM code 740-759, Any chart with a selected list of ICD9-CM

codes outside 740-759, All stillborn infants



Coding: Locally modified BPA/CDC and NBDPS coding system

Data Collected



measurements (weight, gestation, Apgars, etc.), Tests and procedures,

Birth defect diagnostic information



Prenatal diagnostic information, Family history




Data Collection: Electronic file/report filled out by staff at facility

(laptop, web-based, etc.)


Data Analysis

Data analysis software: SAS, Access, STATA


Comparison/verification between multiple data sources, Clinical review,

Timeliness




Observed vs. expected analyses, Epidemiologic studies (using only

program data), Identification of potential cases for other epidemiologic

studies, Grant proposals, Education/public awareness, Prevention projects

System Integration


Funding

Funding Source: 100% General state funds

Other

Web site: http://arbirthdefectsresearch.uams.edu/

Contacts

Bridget S. Mosley, MPH

Arkansas Reproductive Health Monitoring System

13 Children's Way, Slot 512-40

Little Rock, AR, 72202

Phone: 501-364-8951 Fax: 501-364-5050


Charlotte A. Hobbs, MD, PhD

UAMS College of Medicine; Arkansas Center for Birth Defects Research

and Prevention

13 Children's Way, Slot 512-40

Little Rock, AR, 72202

Phone: 501-364-5000 Fax: 501-364-5107




California

California Birth Defects Monitoring Program (CBDMP)


Partner: Local Health Departments, Universities, Hospitals,

Environmental Agencies/Organizations


Start year: 1983


Organizational location: Department of Health (California Department

of Public Health: Maternal, Child, Adolescent Health Division, Center for

Family Health)


Statewide: No, The Program currently monitors a sampling of California

births that are demographically similar to the state as a whole and whose

birth defects rates and trends have been reflective of those throughout

California. Furthermore, the Program has statutory authority to conduct

active surveillance anywhere in the state when warranted by

environmental incidents or concerns.

Current legislation or rule: Health and Safety Code, Division 102, Part

2, Chapter 1, Sections 103825-103855, effective 1982, recodified 1996.


Case Definition

Outcomes covered: Serious structural birth defects, primarily

encompassed within ICD codes 740-759


Fetal deaths - stillbirths, spontaneous abortions, etc. (less than 20 week

gestation, 20 weeks gestation and greater), Terminations (less than 20

week gestation, 20 weeks gestation and greater)

Age: One year

Residence: In-state births to residents of 1 of 8 counties; does not include

births in military hospitals.





ICU/NICU logs or charts, Pediatric logs, Postmortem/pathology logs,

Surgery logs


Discharge summaries, ICU/NICU logs or charts, Pediatric logs,

Postmortem/pathology logs, Surgery logs, Laboratory logs


Cytogenetic laboratories, Genetic counseling/clinical genetics facilities,

Maternal serum screening facilities

Case Ascertainment



codes outside 740-759, Any chart with selected procedure codes, Any

chart with selected defects or medical conditions (e.g., abnormal facies,

congenital heart disease), All stillborn infants, All neonatal deaths,

Terminations, All prenatal diagnosed or suspected cases, apgar 0-0

Conditions warranting chart review beyond the newborn period: Facial

dysmorphism or abnormal facies, Failure to thrive, CNS condition (e.g.,

seizure), GI condition (e.g., recurrent blockage), GU condition (e.g.,

recurrent infections), Cardiovascular condition, All infant deaths

(excluding prematurity), Any infant with a codable defect

Coding: CDC BPA coding system but modified for use in California

Data Collected




Infant complications, Birth defect diagnostic information



Illnesses/conditions, Family history






Database storage/management: SQL Server 2008 R2

Data Analysis

Data analysis software: SAS



data sources, Clinical review, validity checks are done on all abstracts.

Data use and analysis: Routine statistical monitoring, Baseline rates,

Rates by demographic and other variables, Monitoring outbreaks and

cluster investigation, Time trends, Capture-recapture analyses, Observed

vs. expected analyses, Epidemiologic studies (using only program data),

Identification of potential cases for other epidemiologic studies, Needs

assessment, Service delivery, Grant proposals, Education/public

awareness

System Integration

System links: Link case finding data to final birth file, Hospital discharge.

CBDMP links case finding data to final vital statistics birth and fetal

death files

Funding

Funding Source: 69% California Birth Defects Monitoring Fund, 31%

Other federal funding (non-CDC grants)

Other

Web site: www.cdph.ca.gov/programs/CBDMP

Comments: Please send inquiries to [email protected].

Contacts

Barbara Warmerdam

California Birth Defects Monitoring Program,

Maternal, Child and Adolescent Health Program

California Department of Public Health

1615 Capitol Avenue, MS 8304

Sacramento, CA, 95814

Phone: 916-341-6677 Fax: 916-650-0455


Shabbir Ahmad, DVM, MS, PhD

Maternal, Child, and Adolescent Health Program

California Department of Public Health

1615 Capitol Ave, MS 8304

Sacramento, CA, 95814

Phone: 916-650-0300 Fax: 916-650-0305




Colorado

Colorado Responds To Children with Special Needs: Colorado (CRCSN)







Start year: 1988


Organizational location: Department of Health

(Epidemiology/Environment)

Population covered annually: 66,346 (2010)

Statewide: Yes

Current legislation or rule: Colorado Revised Statutes (CRS) 25-1.5-101

- 25-1.5-105


Case Definition

Outcomes covered: Structural birth defects, fetal alcohol syndrome,

selected genetic and metabolic disorders; muscular dystrophy; selected

developmental disabilities; very low birth weight (less than 1500 grams);

others with medical risk factors for developmental delay


Fetal deaths - stillbirths, spontaneous abortions, etc. (less than 20 week

gestation, 20 weeks gestation and greater, less than 20 week limited to

selected post-mortem pathology sites)

Age: Up to the 3rd birthday (up to the 10th birthday for fetal alcohol

syndrome)

Residence: Events occurring in-state or out-of-state to Colorado residents


Case ascertainment: Combination of active and passive case

ascertainment

Vital Records: Birth certificates, Death certificates, Fetal death

certificates

Other state based registries: Newborn hearing screening program,

Newborn metabolic screening program

Delivery hospitals: Disease index or discharge index,

Postmortem/pathology logs, Specialty outpatient clinics, selected

postmortem pathology sites


Postmortem/pathology logs, Specialty outpatient clinics, selected

postmortem pathology sites

Other specialty facilities: Cytogenetic laboratories, Genetic

counseling/clinical genetics facilities

Other sources: Physician reports, selected sites for fetal alcohol

syndrome and muscular dystrophy

Case Ascertainment

Conditions warranting chart review in newborn period: Selected chart

reviews for prenatal to age 3: for statistical trends monitoring (20

conditions - categories); selected death and fetal deaths; fetal alcohol

syndrome (to age 10); active case ascertainment data sources

(postmortem pathology and specialty clinics); quality control (selected

procedures); and others as needed.

Coding: ICD-9-CM, extended code utilized to describe syndromes,

further detail of a condition, and to specify status

Data Collected




information



Illnesses/conditions, Prenatal care, Pregnancy/delivery complications,

Maternal risk factors


Demographic information (race/ethnicity, sex, etc.)


Data Collection: Printed abstract/report submitted by other agencies

(hospitals, etc.), Electronic file/report filled out by staff at facility (laptop,

web-based, etc.), Electronic file/report submitted by other agencies

(hospitals, etc.), 99% of data are collected in electronic format

Database storage/management: Access, Conversion to SQL Server

Data Analysis

Data analysis software: SAS, Access, ArcView (GIS software),

Maptitude, SaTScan

Quality assurance: Validity checks, Comparison/verification between

multiple data sources, Timeliness, ongoing quality control procedures for

problematic conditions and situations; records linkage and de-duplication.




Time-space cluster analyses, Capture-recapture analyses, Observed vs.

expected analyses, Epidemiologic studies (using only program data),


assessment, Referral, Grant proposals, Education/public awareness,

Prevention projects, environmental studies

System Integration

System links: Link to other state registries/databases, Ongoing match to

vital records files (birth, death, fetal death)

Funding

Funding Source: 26% General state funds, 31% Service fees, 43% CDC

grant

Other

Web site: http://www.cdphe.state.co.us

Contacts

Margaret Frances Ruttenber, MSPH

Colorado Responds to Children with Special Needs

4300 Cherry Creek Drive, South

Denver, CO, 80246-1530

Phone: 303-692-2636 Fax: 303-782-0904


Carol Stanton, MBA

CRCSN

4300 Cherry Creek Dr, South

Denver, CO, 80246-1530

Phone: 303-692-2621 Fax: 303-782-0904




Connecticut

Connecticut Birth Defects Registry (CTBDR)

Purpose: Surveillance, Research, Referral to Services, Referral to

Prevention/Intervention, reporting for MCH Block Grant

Partner: Hospitals, Environmental Agencies/Organizations, Early

Childhood Prevention Programs, Advocacy Groups, CT Council on

Genomics


Start year: 2002


Organizational location: Department of Health (Maternal and Child

Health)


Statewide: Yes

Current legislation or rule: Sec. 19a-56a. (Formerly Sec. 10a-132b),

Birth defects surveillance program; Sec. 19a-54. (Formerly Sec. 19-

21a),Registration of physically handicapped children; Sec. 19a-53.

(Formerly Sec. 19-21), Reports of physical defects of children.

Legislation year enacted: Sec. 10a-132b: 1991; Sec. 19-21a: 1949 Sec.

19-21: 1949.

Case Definition

Outcomes covered: All major structural birth defects; biochemical,

genetic and hearing impairment through linkage with Newborn Screening

System; any condition which places a child at risk for needing specialized

medical care (i.e., complications of prematurity, cancer, trauma, etc.)

ICD-9 codes 740 thru 759.9 and 760.71

Pregnancy outcome: Live Births (all gestational ages and birth weights,

PDA ≥ to 2500 gms birth weight)

Age: Up to one year after delivery for birth defects

Residence: In state births to state residents


Case ascertainment: Passive case ascertainment, Population based

Vital Records: Birth certificates, Death certificates, Matched birth/death

file, inpatient hospitalizations and emergency room visits



program


summaries, Reports from health care professionals in newborn nurseries

and NICUs.


Discharge summaries, Reports from health care professionals in pediatric

inpatient and outpatient services planned for future.

Midwifery facilities: Midwifery facilities

Other sources: Physician reports, Mandatory reporting by health care

providers and facilities; CSHCN Programs; Newborn Screening System

(for genetic disorders and hearing impairment).

Case Ascertainment

Coding: ICD-9-CM, test written in 'other' field categories

Data Collected







Illnesses/conditions, Prenatal care, Prenatal diagnostic information,

Pregnancy/delivery complications, Maternal risk factors, Family history









Data Analysis

Data analysis software: SAS, Access, STATA, Arc GIS


multiple data sources, Timeliness




Time-space cluster analyses, Capture-recapture analyses, Epidemiologic

studies (using only program data), Needs assessment, Service delivery,

Referral, Grant proposals, Education/public awareness, Prevention

projects, Provider education

System Integration


Funding

Funding Source: 100% MCH funds

Other

Web site: http://www.ct.gov/dph/birthdefectsregistry

Contacts

Karin Davis, B.S.

Connecticut Department of Public Health, Family Health Division

410 Capitol Avenue, MS #11MAT

Hartford, CT, 06134

Phone: 860-509-7499 Fax: 860-509-7720




Delaware

Delaware Birth Defects Surveillance Project

Purpose: Surveillance, Referral to Prevention/Intervention

Partner: Hospitals, Early Childhood Prevention Programs


Start year: 2007

Earliest year of available data: 2007, 2008, 2009

Organizational location: Department of Health and Social Services,

Division of Public Health, Family Health Services


Statewide: Yes

Current legislation or rule: House Bill No. 197, an act to amend Title 16

of the Delaware Code relating to Birth Defects


Case Definition

Outcomes covered: Birth Defects Registry - Selected birth defects for

passive surveillance, developmental disabilities if due to a birth defect,

selected metabolic defects, genetic diseases, infant mortality, congenital

infections, Autism

Pregnancy outcome: Live Births (any gestation for live birth, greater than

20 weeks for fetal death), Fetal deaths - stillbirths, spontaneous abortions,

etc. (20 weeks gestation and greater)

Age: Birth to 5 years

Residence: In-state and out-of-state birth to state resident, and in-state

birth to state non-resident.



ascertainment, Population based

Vital Records: Birth certificates, Death certificates, hospital discharge

records/data



program, Development Disabilities Surveillance, Cancer registry,

AIDS/HIV registry


summaries, Postmortem/pathology logs, High risk pregnancy


Discharge summaries, Specialty outpatient clinics


Other specialty facilities: Prenatal diagnostic facilities (ultrasound, etc.)


Case Ascertainment


a ICD9-CM code 740-759, Any chart with selected defects or medical

conditions (e.g., abnormal facies, congenital heart disease), Any birth

certificate with a birth defect box checked, All stillborn infants, All

neonatal deaths, All prenatal diagnosed or suspected cases


dysmorphism or abnormal facies, Failure to thrive, Development delay,

Cardiovascular condition, All infant deaths (excluding prematurity),

Ocular conditions, Auditory/hearing conditions, Any infant with a

codable defect

Coding: ICD-9-CM, six-digit modified BPA/ICD-9 codes

Data Collected







Illnesses/conditions, Prenatal care, Pregnancy/delivery complications,

Maternal risk factors




Data Collection: Printed abstract/report filled out by staff, Electronic

file/report submitted by other agencies (hospitals, etc.)

Database storage/management: Natus Medical Inc.

Data Analysis

Data analysis software: Natus Medical Inc.


multiple data sources, Clinical review, none at this time

Data use and analysis: Only became active in early 2010 with review of

calendar year 2007

System Integration

System links: Link to Newborn Bloodspot and Hearing Screening

System integration: Initial check into Newborn Bloodspot Screening

records with a link which pulls info to Birth Defects Registry from

Newborn Bloodspot Screening case management system.

Funding

Funding Source: Genetic screening revenues, Title V MCH Block grant

Contacts

Leah Jones Woodall, MPA

DE Division of Public Health

417 Federal Street

Dover, DE, 19901

Phone: (302) 744-4825 Fax: (302) 739-3313


Kristin Maiden, PhD

Christiana Care Health System

4735 Ogletown Stanton Rd

Newark, DE, 19718

Phone: (302)733-5032




District of Columbia

District of Columbia Birth Defects Surveillance and Prevention Program (DC BDSPP)

Purpose: Research, Referral to Services, Referral to


Partner: Hospitals

Program status: Interested in developing a surveillance program




Data Collected

Mother: Maternal risk factors

Contacts

Karen Watts, BSN, MPA, MBA, RNC, FAHM, PMP

Department of Health, Community Health Administration

899 North Capitol Street, NE 3rd Floor, Washington, DC, 20002

Phone: 202-442-9405 Fax: 202-671-0849


Sandra A. Davis, MPH

Department of Health, Community Health Administration

899 North Capitol Street, NE 3rd Floor, Washington, DC, 20002

Phone: 2024785820 Fax: 2026710854




Florida

Florida Birth Defects Registry (FBDR)

Purpose: Surveillance, Research, Referral to Prevention/Intervention,

educate health care professionals, women of childbearing age and general

public about birth defects.


Environmental Agencies/Organizations, Early Childhood Prevention

Programs, Advocacy Groups, Legislators, federal and state agencies


Start year: 1998



(Epidemiology/Environment), University

Population covered annually: 213,234 in 2011

Statewide: Yes

Current legislation or rule: Section 381.0031(1,2) F.S., allows for

development of a list of reportable conditions. Birth defects were added

to the list in July 1999.


Case Definition

Outcomes covered: Major structural malformations and selected genetic

disorders

Pregnancy outcome: Live Births

Age: Until age 1

Residence: Florida


Case ascertainment: Passive case ascertainment, Population based, FL

has two CDC funded cooperative agreements which use active case

ascertainment which is linked to the passive surveillance program.


file


Delivery hospitals: Disease index or discharge index

Pediatric & tertiary care hospitals: Disease index or discharge index

Case Ascertainment

Coding: ICD-9-CM

Data Collected








Pregnancy/delivery complications, Maternal risk factors




Data Collection: Electronic file/report submitted by other agencies

(hospitals, etc.)

Database storage/management: Access, Dedicated server for birth

defects data.

Data Analysis

Data analysis software: SPSS, SAS, Access, SQL, dBASE


multiple data sources




Observed vs. expected analyses, Epidemiologic studies (using only


studies, Grant proposals, Education/public awareness, Prevention projects

System Integration


data to final birth file, Link to environmental databases, Maternal linked

file.

System integration: The department has created a maternally linked file

beginning with 1998. The birth defects data has been included in this

linked file.

Birth defects data are displayed on the department's Environmental

Public Health Tracking Program site.

Other

Web site: www.fbdr.org

Surveillance reports on file: Publications, procedure manuals, electronic

case ascertaintment dababase and educational materials

Comments: CDC/NCBDDD Cooperative Agreement for enhanced

surveillance of selected birth defects, referral for services and prevention

activities. CDC/NCEH Cooperative Agreement for Environmental Public

Health Tracking for active surveillance of selected birth defects and

analysis of environmental data and birth defects.

Contacts

Jane A. Correia, B.S.

Florida Department of Health

4052 Bald Cypress Way, Bin A08,

Tallahassee, FL, 32399-1712

Phone: 850-245-4444, ext. 2198 Fax: 850-922-8473


Sharon M. Watkins, PhD

Florida Department of Health

4052 Bald Cypress Way, Bin A08

Tallahassee, FL, 32399-1712

Phone: 850-245-4444 ext. 3939 Fax: 850-922-8473




Georgia

Metropolitan Atlanta Congenital Defects Program (MACDP)


Partner: Local Health Departments, Universities, Hospitals, Advocacy

Groups, Laboratories, Prenatal Diagnostic Providers


Start year: 1967


Organizational location: CDC, National Center on Birth Defects and

Developmental Disabilities


Statewide: No, Births to mothers residing within one of five central

counties in the metropolitan Atlanta area of the state of Georgia

Current legislation or rule: State Laws Official Georgia Code Annotated

(OCGA) 31-12-2

Case Definition

Outcomes covered: Major structural or genetic birth defects

Pregnancy outcome: Live Births (≥20 weeks), Fetal deaths - stillbirths,

spontaneous abortions, etc. (20 weeks gestation and greater), Elective

Terminations (all gestational ages)

Age: Before 6 years of age

Residence: Births to mothers residing in one of five central metropolitan

Atlanta counties




certificates




induction logs and miscarriage logs


Discharge summaries



Case Ascertainment



codes outside 740-759, Any chart with a CDC/BPA code, Any chart with

selected defects or medical conditions (e.g., abnormal facies, congenital

heart disease), Any birth certificate with a birth defect box checked,

Infants with low birth weight or low gestation (birth weight < 2500 grams

and/or 20-36 weeks gestation), All stillborn infants, All neonatal deaths,

All elective abortions, All infants with low APGAR scores, All infants in

NICU or special care nursery, All prenatal diagnosed or suspected cases



seizure), GI condition (e.g., recurrent blockage), Cardiovascular

condition, All infant deaths (excluding prematurity), Ocular conditions,

Auditory/hearing conditions, Any infant with a codable defect


Data Collected








complications, Family history






Database storage/management: SQL Server

Data Analysis

Data analysis software: SPSS, SAS, Access


Data/hospital audits, Clinical review, Timeliness




Time-space cluster analyses, Observed vs. expected analyses,


potential cases for other epidemiologic studies, Service delivery,

Education/public awareness, Prevention projects, survival analysis

System Integration

System links: Link case finding data to final birth file, National Death

Index, Birth certificates, Death certificates, Fetal death certificates,

Laboratory Records

Funding

Funding Source: 100% CDC funded

Other

Web site: http://www.cdc.gov/ncbddd/bd/macdp.htm

Surveillance reports on file: MACDP 40th Anniversary Surveillance

Report

Additional information on file: CDC/BPA Defect Code, Including

prenatal diagnoses in BD monitoring

Comments: The 40th Anniversary Surveilance Report was published:

Correa A, Cragan JD, Kucik JE, et al. Reporting birth defects surveillance

data 1968-2003. Birth Defects Research Part A. 2007;79(2):65-186.

Copies are available upon request from: [email protected]

Contacts

Janet D. Cragan, MD, MPH

Centers for Disease Control and Prevention

1600 Clifton Rd., MS E-86

Atlanta, GA, 30333

Phone: 404-498-3807 Fax: 404-498-3040


Pamela Costa, MPH

Centers for Disease Control and Prevention

1600 Clifton Rd., MS E-86

Atlanta, GA, 30333

Phone: 404-498-3488 Fax: 404-498-3040




Georgia

Georgia Birth Defects Reporting and Information System (GBDRIS)





Programs, Advocacy Groups, Legislators


Start year: 2003



Health)


Statewide: Yes

Current legislation or rule: Birth defects are reportable under State Laws

Official Code of Georgia Annotated (OCGA) 31-12-2 and 31-1-3.2 which

mandate the reporting of notifiable diseases and newborn hearing

screening, and Chapters 290-5-3-.02 and 290-5-24 of the Rules of

Department of Human Resources, which regulate the reporting of

notifiable diseases and metabolic disorders.

Legislation year enacted: Updated in 2003

Case Definition

Outcomes covered: Major birth defects, genetic diseases, FAS and CP




Age: Up to 18 years of age



Case ascertainment: Passive case ascertainment



program, Development Disabilities Surveillance


summaries


Discharge summaries



Case Ascertainment



conditions (e.g., abnormal facies, congenital heart disease)

Coding: ICD-9-CM

Data Collected




information





(hospitals, etc.), Electronic file/report submitted by other agencies

(hospitals, etc.)


Data Analysis



Comparison/verification between multiple data sources

Data use and analysis: Public health program evaluation, Service

delivery

System Integration

System integration: We are working to integrate it with our child health

data system that contains birth, genetics and intervention referrals.

Other

Web site: http://health.state.ga.us/epi/mch/birthdefects/gbdris/index.asp

Comments: In Georgia, please note that other surveillance is performed

by MACDP and that is where the numbers for your report come from.

Contacts

Brendan Noggle, MPH

GA Division of Public Health, MCH Program

2 Peachtree St., NW, Suite 11-463

Atlanta, GA, 30303

Phone: 404-463-2191 Fax: 404-657-7517


Katherine Kahn, MPH

GA Division of Public Health, MCH Program

2 Peachtree St., NW, Suite 14-482

Atlanta, GA, 30303

Phone: 404-657-2602 Fax: 404-657-7517




Hawaii

Hawaii Birth Defects Program (HBDP)

Purpose: Surveillance, Research, Report incidences and trends, develop

preventive strategies, develop a statewide registry


Nursing Services, Early Childhood Prevention Programs, Advocacy

Groups, Legislators, Hawaii Health Data Warehouse


Start year: 1988


Organizational location: Department of Health (Children with Special

Health Needs Branch)

Population covered annually: 18,913 (average over past 3 years)

Statewide: Yes

Current legislation or rule: HRS §321.421 to 426; HRS §321.41 to 44


Case Definition

Outcomes covered: All outcomes identified on the ICD-9 and CDC/BPA

codes for the NBDPN Annual Report to CDC as well as other adverse

neonatal conditions such as congenital infections, fetal alcohol syndrome,

and specific chromosomal syndromes



Elective Terminations (all gestational ages, elective medical terminations

that were carried out because a screening test or diagnostic procedure

documented that the fetus was severely impaired with a birth defect, and the

parents elected not to bring the baby to term)

Age: Up to one year after delivery, except for Fetal Alcohol Syndrome,

which can be diagnosed at any age.

Residence: All in-state Hawaii births (resident and non-resident).


Case ascertainment: Active case ascertainment, Population based, Hospital

based

Delivery hospitals: Disease index or discharge index, Discharge summaries,

Obstetrics logs (i.e., labor & delivery), Regular nursery logs, ICU/NICU

logs or charts, Postmortem/pathology logs, Surgery logs, Prenatal

summaries


Discharge summaries, ICU/NICU logs or charts, Postmortem/pathology

logs, Surgery logs, Laboratory logs




Case Ascertainment

Conditions warranting chart review in newborn period: Any chart with a

ICD9-CM code 740-759, Any chart with a selected list of ICD9-CM codes

outside 740-759, Any chart with selected defects or medical conditions

(e.g., abnormal facies, congenital heart disease), All stillborn infants, All

neonatal deaths, All prenatal diagnosed or suspected cases, Medical

terminations and spontaneous abortions where fetus was diagnosed with a

birth defect, and parents elected not to bring baby to term, or mother

spontaneously aborted.

Conditions warranting chart review beyond the newborn period: All infant

deaths (excluding prematurity), Childhood deaths between 1 and 6, Any


Coding: CDC coding system based on BPA, ICD-9-CM

Data Collected

Infant/fetus: Identification information (name, address, date-of-birth, etc.),

Demographic information (race/ethnicity, sex, etc.), Birth measurements

(weight, gestation, Apgars, etc.), Tests and procedures, Infant

complications, Birth defect diagnostic information






Demographic information (race/ethnicity, sex, etc.), Illnesses/conditions,

Family history


Data Collection: Electronic file/report filled out by staff at facility (laptop,

web-based, etc.)

Database storage/management: Access, SQL Server 2000

Data Analysis

Data analysis software: Access, SQL Server 2000


checking of assigned codes, Comparison/verification between multiple data

sources, Clinical review, Timeliness




Needs assessment, Grant proposals, Education/public awareness, Prevention

projects, State Surveillance Data Report

Funding

Funding Source: 100% Birth Defects Special Fund (state fund from

marriage license fee)

Other

Web site: http://hawaii.gov/health/family-child-

health/genetics/hbdhome.html

Surveillance reports on file: Thirteen HBDP Statewide Surveillance Data

Reports: (1) 1989-1991, (2) 1988-1993, (3) 1988-1994, (4) 1988-1995, (5)

1987-1996, (6) 1986-1997, (7) 1986-1998, (8) 1986-1999, (9) 1986-2000,

(10) 1986-2001, (11) 1986-2002, (12) 1986-2003, (13) 1986-2005.

Additional information on file: Hawai'i Statutory Authority; HBDP

Publications; HBDP Case finding list; HBDP BPA Codes

Contacts

Patricia L. Heu, M.D., M.P.H.

Children with Special Health Needs Branch, Hawaii State Department

of Health

741 Sunset Avenue

Honolulu, HI, 96816

Phone: 808-733-9058 Fax: 808-733-9068


Sylvia M. Au, M.S.

Children with Special Health Needs Branch, Hawaii State Department of

Health

741 Sunset Avenue

Honolulu, HI, 96816

Phone: 808-733-9063 Fax: 808-733-9068




Idaho

Program status: No surveillance program in Idaho

Contacts

Pam Harder

Idaho Dept of Health & Welfare

450 West State Street, Boise, ID, 83720

Phone: 208-334-6658 Fax: 208-334-4946


Jacquie Watson

Children’s Special Health Program Idaho Department of Health and Welfare

450 West State Street, Boise, ID, 83720

Phone: 208-334-5963 Fax: 208-334-4946 E-mail: [email protected]

Illinois

Adverse Pregnancy Outcomes Reporting System (APORS)



Partner: Local Health Departments, Hospitals, Early Childhood Prevention

Programs, State agency serving children with special healthcare needs


Start year: 1986





Statewide: Yes

Current legislation or rule: Illinois Health and Hazardous Substances

Registry Act (410 ILCS 525)


Case Definition

Outcomes covered: ICD-9-CM Codes 740.0 through 759.9; infants positive

for controlled substances; very low birth weight (< 1500g); fetal death;

death during the newborn hospital stay; serious congenital infections;

congenital endocrine, metabolic or immune disorders; congenital blood

disorders; other conditions such as retinopathy of prematurity, intrauterine

growth retardation, FAS



and greater)




Case ascertainment: Combination of active and passive case ascertainment,

Population based, Hospital based


Other state based registries: Newborn hearing screening program, Newborn

metabolic screening program


hospitals mandated to identify newborn cases and report to IDPH


Discharge summaries, hospitals mandated to report newborns discharged

from any of the NICU or specialty units

Case Ascertainment

Conditions warranting chart review in newborn period: Charts of children

identified by APORS with major structural birth defects or Trisomy 13, 18

or 21 are reviewed. Prior to 2008, any chart with ICD9-CM code 740-759,

or with selected conditions outside that range were reviewed.

Conditions warranting chart review beyond the newborn period: Charts of

children identified by APORS with major structural birth defects or

Trisomy 13, 18 or 21 are reviewed. Prior to 2008, any chart with ICD9-CM

code 740-759, or with selected conditions outside that range were reviewed.

Coding: Modified CDC/BPA coding system

Data Collected



(weight, gestation, Apgars, etc.), Birth defect diagnostic information


Demographic information (race/ethnicity, sex, etc.), Gravidity/parity






file/report filled out by staff at facility (laptop, web-based, etc.), Electronic


Database storage/management: Access, Mainframe

Data Analysis

Data analysis software: SAS, Access, Arc Map, JoinPoint & SaTScan


checking of assigned codes, Comparison/verification between multiple data

sources, Data/hospital audits, Timeliness




Epidemiologic studies (using only program data), Needs assessment,

Service delivery, Referral, Grant proposals, Education/public awareness,

Prevention projects, Public Use Data Set

System Integration


System integration: The APORS program data is incorporated into a data

warehouse at the Illinois Department of Healthcare and Family Services

Funding

Funding Source: 63% General state funds, 37% CDC grant

Other

Web site: www.idph.state.il.us/about/epi/apors.htm

Surveillance reports on file: Surveillance reports are available on-line --

visit website listed above, as are public use data sets.

Contacts

Jane Fornoff, PhD

Illinois Department of Public Health

535 West Jefferson St, 3rd Floor, Springfield, IL, 62761

Phone: 217-785-7133 Fax: 217-524-1770


Tiefu Shen, MD, PhD

Illinois Department of Public Health

535 West Jefferson St, 3rd Floor, Springfield, IL, 62761

Phone: 217-785-1873 Fax: 217-524-1770




Indiana

Indiana Birth Defects & Problems Registry (IBDPR)

Purpose: Surveillance, Research, Referral to Services

Partner: Universities, Hospitals, Early Childhood Prevention Programs,

Advocacy Groups, Legislators


Start year: 2002

Earliest year of available data: 2003 birth data is available in 2006


(Epidemiology/Environment), Department of Health (Maternal and Child

Health), Department of Health (State Health Data Center)


Statewide: Yes

Current legislation or rule: IC 16-38-4-7, Rule 410 IAC 21-3


Case Definition

Outcomes covered: ICD-9-CM Codes 740-759.9, Fetal Alcohol Spectrum

Disorder (760.71), Pervasive Developmental Disorder (299.0), fetal

deaths, metabolic disorders & hearing loss from newborn screening,

selected neoplasms, congenital blood disorders, and certain eye disorders.


Age: Up to 5 years (FAS, autism); up to 3 years for all other birth defects

Residence: In- and out-of-state (as reported to IBDPR) births to state

residents



ascertainment, Hospital based


file



Delivery hospitals: Disease index or discharge index, Chart audits of 45

targeted birth defects


Chart audits of 45 targeted birth defects



Case Ascertainment



codes outside 740-759



Coding: ICD-9-CM, and BPA

Data Collected













(laptop, web-based, etc.), Electronic file/report submitted by other

agencies (hospitals, etc.), ISDH Chart Auditors submit hospital chart

audit information electronically through use of a laptop and a web-based

portal to the Indiana State Department of Health Repository, which stores

and integrates the data.

Database storage/management: Oracle

Data Analysis

Data analysis software: SAS, Oracle and ArcView GIS



data sources, Data/hospital audits, Clinical review, Timeliness



cluster investigation, Needs assessment

System Integration



System integration: The database is linked with birth, death, newborn

hearing screening, and newborn metabolic screening data.

Funding

Funding Source: 20% MCH funds, 80% from the IBDPR fund obtained

through birth certificate sales

Other

Web site: www.birthdefects.in.gov

Contacts

Malorie Hensley, MS

Indiana State Department of Health

2 North Meridian Street, 7F

Indianapolis, IN, 46204

Phone: 317-233-7019 Fax: 317-234-2995


Robert Bowman, MS, MA, MS

Indiana State Department of Health

2 North Meridian Street, 7F

Indianapolis, IN, 46204

Phone: 317-233-1231 Fax: 317-234-2995




Iowa

Iowa Registry for Congenital and Inherited Disorders (IRCID)


Prevention/Intervention, Prevention education programs


Environmental Agencies/Organizations, Advocacy Groups, Legislators


Start year: 1983


Organizational location: University

Population covered annually: 37,831 average 10 year

Statewide: Yes

Current legislation or rule: Iowa Code 136A, Iowa Administrative Code

641-4.7

Legislation year enacted: 1986; Revised 2001, 2003, 2004, 2009

Case Definition

Outcomes covered: Major birth defects, Duchenne/Becker muscular

dystrophy, fetal deaths with and without birth defects, newborn screening

disorders




Age: 1 year

Residence: Maternal residence in Iowa at time of delivery




certificates, Stillbirth Evaluation Protocol


Newborn metabolic screening program, Iowa Perinatal Care Program


summaries, Specialty outpatient clinics






Other sources: Physician reports, Outpatient surgery facilities

Case Ascertainment




selected procedure codes, Any chart with selected defects or medical



neonatal deaths, All elective abortions, All prenatal diagnosed or

suspected cases, muscular dystrophy



CNS condition (e.g., seizure), GI condition (e.g., recurrent blockage),

Cardiovascular condition, All infant deaths (excluding prematurity),


codable defect


Data Collected














Database storage/management: Access, Oracle, PC server

Data Analysis

Data analysis software: SPSS, SAS, Access, Oracle



data sources, Clinical review, Timeliness




Capture-recapture analyses, Observed vs. expected analyses,


potential cases for other epidemiologic studies, Needs assessment,


Prevention projects

System Integration

System links: Link case finding data to final birth file, Link to

environmental databases. For specific studies, data may be linked with

environmental databases or other state databases.

Funding


Contacts

Paul A. Romitti, Ph.D.

Iowa Registry for Congenital and Inherited Disorders

UI Research Park 100 BVC Room W245-G

Iowa City, IA, 52242-5000

Phone: 319-384-1549 Fax: 319-353-8711




Kansas

Birth Defects Information System (BDIS)

Purpose: Registry

Partner: Hospitals


Start year: 1985



Health), Department of Health (Vital Statistics)

Population covered annually: 40,439 (Year 2010)

Statewide: Yes

Current legislation or rule: K.S.A. 65-1,241 through 65-1,246


Case Definition

Outcomes covered: The outcome data below are available from Office of

Vital Statistics. Live births and fetal deaths information are used as part

of the birth defects information system (BDIS). Thirteen anomalies (and

"other" congenital anomalies) are listed on the birth certificate and are

reported, however, these are not linked to ICD-9 codes. In addition to

major birth defects, low birth weight and low Apgar scores are also

reported to BDIS.

Pregnancy outcome: Live births (all gestational ages and birth weights),

Fetal deaths - stillbirths, spontaneous abortions, etc. (greater than 350

grams)

Age: Under five years of age with a primary diagnosis of a congenital

anomaly or abnormal condition.

Residence: In state and out of state births to Kansas residents and in-state

births to out of state residents






program


Case Ascertainment

Coding: ICD-9-CM

Data Collected



measurements (weight, gestation, apgars, etc.)









(hospitals, etc.), In Kansas, birth defects (congenital anomalies) are

collected through three data sources: birth certificates, fetal death

certificates, and the congenital malformations and fetal alcohol syndrome

reporting form. The birth certificates data (congenital anomalies and

abnormal conditions) contained within the Vital Statistics Integrated

Information System are extracted, downloaded and transferred to BDIS.

Any additional reports of congenital anomalies from physicians, hospitals

and freestanding birthing centers are entered manually into BDIS.

Database storage/management: SQL Server

Data Analysis


Quality assurance: Comparison/verification between multiple data

sources, Office of Vital Statistics conducts verification on birth certificate

data.



cluster investigation, Time trends, Grant proposals, ad-hoc upon request

System Integration

System links: Link to other state registries/databases

System integration: Our program has a link with vital statistics records.

BDIS uses the same data system (WebBFH) and shares information with

Children and Youth with Special Health Care Needs Program.

Funding


Contacts

Jamie S. Kim, MPH

Kansas Department of Health & Environment

1000 SW Jackson, Suite 220

Topeka, KS, 66612-1274

Phone: 785-296-6467 Fax: 785-296-6553


Jamey. Kendall, RN, BSN

Kansas Department of Health & Environment

1000 SW Jackson, Suite 220

Topeka, KS, 66612-1274

Phone: 785-291-3363 Fax: 785-296-6553




Kentucky

Kentucky Birth Surveillance Registry (KBSR)


Prevention/Intervention, Prevention of birth defects





Start year: 1996



Health), Department for Public Health, Division of Maternal and Child

Health, Early Childhood Development Branch


Statewide: Yes

Current legislation or rule: KRS 211.651-211.670


Case Definition

Outcomes covered: Major birth defects, genetic diseases, fetal mortality



and greater, 20 weeks or 350 gms)

Age: Up to fifth birthday

Residence: All in-state births; out of state births to state residents



ascertainment


file, Fetal death certificates, medical laboratory reporting mandated;

outpatient reporting voluntary



program


summaries, Obstetrics logs (i.e., labor & delivery), ICU/NICU logs or

charts, Specialty outpatient clinics, laboratory records


Discharge summaries, ICU/NICU logs or charts, laboratory records



Other sources: Physician reports, local health departments

Case Ascertainment



codes outside 740-759, Any chart with selected defects or medical


certificate with a birth defect box checked



seizure), Cardiovascular condition, Any infant with a codable defect

Coding: ICD-9-CM, ICD-10 for Vital Statistics death data

Data Collected














agencies (hospitals, etc.)


Data Analysis

Data analysis software: SAS, Access, Link Plus

Quality assurance: Re-abstraction of cases, Double-checking of assigned

codes, Comparison/verification between multiple data sources,

Data/hospital audits, Clinical review, Timeliness







Prevention projects, IRB-approved research projects

System Integration


System integration: True positives identified by newborn screening are

integrated into the KBSR database.

Funding


Other

Web site: http://chfs.ky.gov/dph/ach/ecd/kbsr.htm

Contacts

Sandy G. Fawbush, RN, BSN

Kentucky Department for Public Health

275 East Main Street, HS 2WC

Frankfort, KY, 40621

Phone: 502-564-3756 x3563 Fax: 502-564-8389


Troi J Cunningham, RN

Kentucky Department for Public Health

275 East Main Street, HS 2WC

Frankfort, KY, 40621

Phone: 502-564-3756 x3779 Fax: 502-564-8389




Louisiana

Louisiana Birth Defects Monitoring Network (LBDMN)



Partner: Centers for Disease Control and Prevention, Louisiana State

University HSC School of Medicine, Hospitals, Louisiana Environmental

Public Health Tracking Program, Early Childhood Prevention Programs,

Louisiana Public Health Institute, Louisiana Center for Health Statistics

and Vital Records, March of Dimes, Louisiana Maternal and Child Health

Program, Louisiana Genetic Diseases Program, Louisiana Hearing,

Speech, and Vision Program, and Louisiana Medicaid Office.


Start year: 2005


Organizational location: Department of Health and Hospitals (Title V

Children and Youth with Special Health Care Needs Programs)

Population covered annually: Approx. 62,000 live births (2011)

Statewide: No

Current legislation or rule: Law: LA R.S. 40:31.41 - 40:31.48, 2001.

DHH Rule: LAC 48:V.Chapters 161 and 163


Case Definition

Outcomes covered: Major structural birth defects and selected genetic

diseases

Pregnancy outcome: Live Births (≥ 20 weeks or ≥ 350 grams)

Age: Birth through three years old

Residence: In- and out-of-state births to state residents


Case ascertainment: Active surveillance, Population based

Vital Records: Birth certificates, Matched birth/death file


summaries, ICU/NICU logs or charts


Discharge summaries, ICU/NICU logs or charts

Case Ascertainment


a selected list of ICD9-CM codes 740-759; 760.71; 762.8


child up to three years of age with a selected birth defects code


Data Collected

Live births/children up to 3 years of age: Identification information

(name, address, date-of-birth, etc.), Demographic information

(race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgar

score, etc.), Tests and procedures, and Birth defect diagnostic information









(laptop, web-based, etc.), Electronic scanning of printed records, Hand-

written, printed forms phased out in 2011.

Database storage/management: Access, Excel, and InfoPath/SharePoint

Data Analysis

Data analysis software: SAS and GIS (Arc View)

Quality assurance: Validity checks, Re-abstraction of cases,

Comparison/verification between multiple data sources, Timeliness



variables, Time trends, Education/public awareness, Prevention projects

System Integration

System links: Link case finding data to birth records, child death records,

hospital inpatient discharge data, and Medicaid data up to three years of

age

Funding

Funding Source: 28% CDC grant, 72% Title V Block Grant funds

Other

Web site: http://new.dhh.louisiana.gov/index.cfm/page/771

Surveillance reports on file: Louisiana Morbidity Report

Additional information on file: Advisory Board Documentation

Comments:

Web-based birth defects database integrated with Louisiana Electronic

Event Registration System (LEERS) is under development;

LBDMN Advisory Board:

http://wwwprd.doa.louisiana.gov/boardsandcommissions/viewBoard.cfm

?board=192

Contacts

Dionka C. Pierce, MPH, Interim Program Manager

DHH / OPH / CSHS

1450 Poydras St., Ste 1950

New Orleans, LA, 70112

Phone: 504-568-5055 Fax: 504-568-7529


Susan Berry, MD, MPH

DHH / OPH / CSHS

1450 Poydras St., Ste 1950

New Orleans, LA, 70112

Phone: 504-568-5055 Fax: 504-568-7529




Maine

Maine CDC Birth Defects Program (MBDP)


Prevention/Intervention, Education

Partner: Universities, Hospitals, Community Nursing Services,


Programs, Advocacy Groups, March of Dimes


Start year: 1999


Organizational location: Department of Health (Division of Population

Health/MCH Unit/CSHN)


Statewide: Yes

Current legislation or rule: 22 MRSA c. 1687


Case Definition

Outcomes covered: Selected major birth defects: NTD, clefts,

gastroschisis, omphalocele, trisomy 21, reduction deformities of upper

and lower limb, hypospadias and major heart defects



and greater, prenatally diagnosed at any gestation), Elective Terminations

(prenatally diagnosed at any gestation)

Age: Through age one

Residence: All in-state births to Maine residents



Passive case ascertainment with active case confirmation


file, Fetal death certificates



program




Surgery logs, Specialty outpatient clinics



Postmortem/pathology logs, Surgery logs, Laboratory logs, Specialty

outpatient clinics





Other sources: Physician reports, Children with Special Health Needs

Case Ascertainment





neonatal deaths, All infants in NICU or special care nursery, All prenatal

diagnosed or suspected cases

Conditions warranting chart review beyond the newborn period:

Cardiovascular condition, All infant deaths (excluding prematurity), Any



Data Collected













Electronic file/report submitted by other agencies (hospitals, etc.),

Electronic scanning of printed records

Database storage/management: Oracle, Citrix, University of

Maine/Center for Excellence in Developmental Disabilities ChildLINK

database system electronic abstraction record/hospital case

reports/electronic submission of hospital discharge data. On-line hospital

case report form.

Data Analysis

Data analysis software: SAS, Stat-exact





Rates by demographic and other variables, Needs assessment, Service

delivery, Referral, Grant proposals, Education/public awareness,

Prevention projects

System Integration



System integration: Newborn Hearing/ Newborn Bloodspot Screening

Programs

Funding

Funding Source: 85% MCH funds, 15% Maine Environmental Public

Health Tracking grant

Other

Web site: http://www.maine.gov/dhhs/boh/cshn/birth_defects/index.html

Contacts

Toni G. Wall, MPA

Department of Health & Human Services

11 State House Station, 286 Water St.-7th floor

Augusta, ME, 04333

Phone: 207-287-5350 Fax: 207-287-5355


Diane C. Haberman, MSW, LCSW

Department of Health & Human Services

11 State House Station, 286 Water St. 7th floor

Augusta, ME, 04333

Phone: 207-287-8424 Fax: 207-287-5355




Maryland

Maryland Birth Defects Reporting and Information System (BDRIS)






Start year: 1983



(Epidemiology/Environment), Department of Health (Prevention and

Health Promotion Administration)


Statewide: Yes

Current legislation or rule: Health-General Article, Section 18-206;

Annotated Code of Maryland


Case Definition

Outcomes covered: Selected birth defects - anencephaly, spina bifida,

hydrocephaly, cleft lip, cleft palate, esophageal atresia/stenosis,

rectal/anal atresia, hypospadias, reduction deformity - upper or lower

limb, congenital hip dislocation, and Down syndrome until 2009, then all

significant birth defects



and greater, or ≥ 500 grams weight; reports accepted on fetal deaths <500

grams or <20 weeks gestation if sent to us), Elective Terminations (all

gestational ages; reports accepted on terminations <500 grams or <20

weeks gestation if sent to us; BDRIS has no specific legal authority to

collect information on terminations. Maryland does not require that any

certificate be filed with Vital Records for a termination unless the body is

transported for burial)

Age: Newborn

Residence: All in-state births



Multiple-Source





program, Sickle Cell Disease, Critical Congenital Heart Defect follow Up

Program

Delivery hospitals: Obstetrics logs (i.e., labor & delivery), Regular

nursery logs, ICU/NICU logs or charts, primary source: sentinel birth

defects hospital report form

Pediatric & tertiary care hospitals: ICU/NICU logs or charts, primary

source: sentinel birth defects hospital report form


Other specialty facilities: Genetic counseling/clinical genetics facilities,


Case Ascertainment




certificate with a birth defect box checked, All fetal death certificates

Coding: ICD-9-CM

Data Collected













abstract/report submitted by other agencies (hospitals, etc.)

Database storage/management: Access, Mainframe, Visual dBASE,

SAS, ASCII files

Data Analysis











Prevention projects

System Integration

System links: In the process of linkage with other state

registries/databases

Funding


Contacts

Debra Harper-Hill

Maryland Dept. of Health & Mental Hygiene

201 W. Preston Street, Room 423

Baltimore, MD, 21201

Phone: 410-767-6625 Fax: 443-333-7956


Donna X. Harris

Maryland Dept. of Health & Mental Hygiene

201 W. Preston Street, Room 423

Baltimore, MD, 21201

Phone: 410-767-5642 Fax: 443-333-7956




Massachusetts

Birth Defects Monitoring Program, Massachusetts Center for Birth Defects Research and Prevention, Massachusetts Department of Public Health (MBDMP)



Partner: Universities, Hospitals, Environmental Agencies/Organizations,

Early Childhood Prevention Programs, Advocacy Groups


Start year: 1997

Earliest year of available data: 1999 for statewide data

Organizational location: Department of Public Health (Bureau of Family

Health and Nutrition)


Statewide: Yes

Current legislation or rule: Massachusetts General Laws, Chapter 111,

Section 67E. In 2002 the Massachusetts Legislature amended this statute,

expanding the birth defects monitoring program. Regulations (105 CMR

302.000) were promulgated on February 6, 2009.


Case Definition

Outcomes covered: Major structural birth defects and chromosomal

anomalies of medical, surgical or cosmetic significance


Fetal deaths - stillbirths, spontaneous abortions, etc. (reportable fetal

deaths: ≥20 weeks gestation or ≥350 grams)

Age: Up to one year

Residence: In and out-of-state births to state residents





certificates

Delivery hospitals: Disease index or discharge index, Obstetrics logs (i.e.,

labor & delivery), Regular nursery logs, ICU/NICU logs or charts,

Postmortem/pathology logs


ICU/NICU logs or charts, Postmortem/pathology logs, Specialty

outpatient clinics


Case Ascertainment





infants, All neonatal deaths


dysmorphism or abnormal facies, Failure to thrive, Cardiovascular

condition, All infant deaths (excluding prematurity), Auditory/hearing

conditions, Any infant with a codable defect


Data Collected














file/report submitted by other agencies (hospitals, etc.), Electronic

scanning of printed records, Data from printed Confidential Reporting

and Abstracting Form is entered into electronic surveillance database.


Data Analysis

Data analysis software: SAS, Access, Excel









potential cases for other epidemiologic studies, Referral, Grant proposals,

Education/public awareness, Prevention projects, 1) selected cases from

surveillance are eligible for CDCs National Birth Defects Prevention

Study 2) Down syndrome and cardiovascular defects used for CDC grant

to determine prevalence, disparities, and cost of these defects; 3)

contributed data to other surveillance research projects

System Integration

System links: 1) Link case finding data to final birth file, 2) Link case

finding data to final fetal death file, 3) Massachusetts Pregnancy to Early

Life Longitudinal (PELL) Linkage Project

Funding


Other

Web site: http://www.mass.gov/dph/birthdefects

Surveillance reports on file: go to http://www.mass.gov/dph/birthdefects

to view or download annual surveillance reports.

Contacts

Marlene Anderka, ScD, MPH

Massachusetts Department of Public Health

5th Floor, 250 Washington Street

Boston, MA, 02108-4619

Phone: 617-624-6045 Fax: 617-624-5574


Cathy Higgins, BA

Massachusetts Department of Public Health

5th Floor, 250 Washington Street

Boston, MA, 02108-4619

Phone: 617-624-5510 Fax: 617-624-5574




Michigan

Michigan Birth Defects Registry (MBDR)


Prevention/Intervention, Prevalence and mortality statistics


Childhood Prevention Programs, Advocacy Groups, Legislators


Start year: 1992


Organizational location: Department of Health (Vital Statistics)


Statewide: Yes

Current legislation or rule: Public Act 236 of 1988


Case Definition

Outcomes covered: Congenital anomalies, certain infectious diseases,

conditions caused by maternal exposures and other diseases of major

organ systems


Fetal deaths - stillbirths, spontaneous abortions, etc. (20 weeks or >400

grams)

Age: Up to two years after delivery

Residence: Michigan births regardless of residence, out of state births

diagnosed or treated in Michigan regardless of residence


Case ascertainment: Passive case ascertainment, Combination of active

and passive case ascertainment, Population based


file, Fetal death certificates, Fetal deaths since 2004 only



program, Cancer registry, AIDS/HIV registry

Delivery hospitals: Disease index or discharge index, Specialty outpatient

clinics


Specialty outpatient clinics

Third party payers: Medicaid databases, CSHCS



Case Ascertainment


a selected list of ICD9-CM codes outside 740-759, Any chart with


heart disease), Any birth certificate with a birth defect box checked





(excluding prematurity), Childhood deaths between 1 and 6, Ocular

conditions, Auditory/hearing conditions, Any infant with a codable defect

Coding: ICD-9-CM

Data Collected
















Database storage/management: FoxPro

Data Analysis

Data analysis software: SPSS, Access, Fox-pro, Excel



data sources, Data/hospital audits, Timeliness



cluster investigation, Time trends, Observed vs. expected analyses,



Service delivery, Referral, Grant proposals, Education/public awareness

System Integration


data to final birth file, CSHCS, WIC

System integration: No, data from vital records and other sources are

extracted and loaded into registry as opposed to truly integrated database

structures.

Funding

Funding Source: 20% CDC grant, 80% Vital Records Fees

Other

Web site: http://www.michigan.gov/mdch/0,1607,7-132-2944_4670---

,00.html

Additional information on file:

http://www.michigan.gov/mdch/0,1607,7-132-2945_5221-16665--

,00.html

Contacts

Glenn Edward Copeland, MBA

Michigan Birth Defects Registry

201 Townsend

Lansing, MI, 48913

Phone: 517-335-8677 Fax: 517-335-8711


Lorrie Simmons, RHIT

Michigan Dept. of Community Health

201 Townsend.

Lansing, MI, 48913

Phone: 517-335-9197 Fax: 517-335-8711




Minnesota

Minnesota Birth Defects Information System (BDIS)





Groups, Legislators


Start year: 2005


Organizational location: Department of Health (Division of Community

and Family Health)


Statewide: No, The statewide surveillance system will be phased in over a

number of years. Data is currently being collected in the two largest

counties in Minnesota Hennepin and Ramsey counties). These two

counties account for approximately 50 percent of the births.

Current legislation or rule: MS 144.2215-2219


Case Definition

Outcomes covered: Major "reported birth defects" as defined by CDC

and ICD-9 codes up to 1 year of age


Age: Up to 1 year after delivery

Residence: In-state data


Case ascertainment: Active case ascertainment, Combination of active

and passive case ascertainment, Population based, Hospital based


file



program


summaries, Obstetrics logs (i.e., labor & delivery), ICU/NICU logs or

charts, Specialty outpatient clinics


Discharge summaries, ICU/NICU logs or charts, Pediatric logs, Specialty

outpatient clinics

Third party payers: Medicaid databases

Case Ascertainment





Conditions warranting chart review beyond the newborn period:



Data Collected













(laptop, web-based, etc.), laptops encrypted and data loaded into web-

based database

Database storage/management: Web-based department-wide integrated

disease surveillance database

Data Analysis




data sources, Data/hospital audits, Clinical review, Timeliness, physician

review as needed;



variables, Needs assessment, Referral, Grant proposals, Education/public

awareness, Prevention projects, collaboration with Environmental Public

Health Tracking Program, phased-in statewide system expansion

beginning in 2010; Many of these listed above will be used when full data

sets are available

System Integration



System integration: Program plans to integrate with Newborn

Screening/Hearing and collaborate with other regional programs.

Funding


Other

Web site: http://www.health.state.mn.us/divs/eh/birthdefects

Surveillance reports on file: Annual reports: 2005-2009

Additional information on file: Folic Acid Guidelines for physicians

Contacts

Barbara Frohnert, MPH

Minnesota Department of Health

85 East 7th Place

St. Paul, MN, 55164

Phone: 651-201-5953 Fax: 651-201-3590


Kristin Oehlke, MS, CGC

Minnesota Department of Health

85 East 7th Place

St. Paul, MN, 55164

Phone: 651-201-3648 Fax: 651-201-3590




Mississippi

Mississippi Birth Defects Surveillance Registry (BDRS)

Purpose: Surveillance

Partner: Local Health Departments, Hospitals, Title V Children with

Special Health Care Needs


Start year: 2000



Health), Department of Health (Genetic Services Bureau)


Statewide: Yes

Current legislation or rule: Section 41-21-205 of the Mississippi Code of

1972


Case Definition

Outcomes covered: Live births and reportable fetal deaths with birth

defects (fetal death of 20 completed weeks of gestation or more, or a

weight of 350 grams or more) shall be reported.



and greater, or 350 grams or more)


Residence: In state and out of state births to residents



Vital Records: Birth certificates, Death certificates



program


summaries





Case Ascertainment

Coding: ICD-9-CM

Data Collected




information








Data Analysis



Timeliness


Rates by demographic and other variables, Needs assessment,

Education/public awareness

Funding

Funding Source: 100% Genetic screening revenues

Other

Web site: www.healthyms.com

Surveillance reports on file: Birth Defects Surveillance Report 2000-

2007

Contacts

Beryl Polk, PhD

Mississippi State Dept. of Health

570 E. Woodrow Wilson Ave, Suite 200

Jackson, MS, 39215-1700

Phone: 601-576-7619 Fax: 601-576-7498


Patricia Terry, MS

Mississippi State Dept. of Health

570 E. Woodrow Wilson Ave, Suite 200

Jackson, MS, 39215-1700

Phone: 601-576-7619 Fax: 601-576-7498




Missouri

Missouri Birth Defects Surveillance System


Partner: Environmental Agencies/Organizations, Legislators


Start year: 1985


Organizational location: Department of Health (Vital Statistics)


Statewide: Yes

Case Definition

Outcomes covered: ICD9 codes 740-759, plus genetic, metabolic, and

other disorders



and greater, Fetal death certificates are only source of data)

Age: Up to one year after delivery

Residence: In- and out-of -state births to state residents





Delivery hospitals: Discharge summaries

Pediatric & tertiary care hospitals: Discharge summaries, Specialty

outpatient clinics

Case Ascertainment

Coding: ICD-9-CM, ICD-10

Data Collected







Prenatal care, Pregnancy/delivery complications, Maternal risk factors







Database storage/management: SAS

Data Analysis





Rates by demographic and other variables, Time trends, Education/public

awareness

System Integration


Funding


Other

Web site: http://health.mo.gov/data/birthdefectsregistry/index.php

Surveillance reports on file: MO Birth Defects Report 1996-2000

Contacts

Ray Shell, BS

Missouri Dept of Health, Bureau of Vital Statistics

920 Wildwood Dr.

Jefferson City, Missouri, 65109

Phone: 573-751-6343 Fax: 573-526-4102


Montana

Montana Birth Outcomes Monitoring System (MBOMS)

Purpose: Surveillance, Referral to Services

Partner: Private practice physicians


Start year: 1999



Health)

Population covered annually: ~12,000

Current legislation or rule: none

Case Definition

Outcomes covered: Major structural birth defects, chromosomal

anomalies specified in the CDC 45 reportables for births occurring in

calendar years 2000 through 2004. Registry suspended beginning with

calendar year 2006 births due to loss of CDC funding.

Pregnancy outcome: 20 weeks and greater

Funding

Funding Source: No funding available since 8/26/2005

Other

Comments: Due to lack of funding, Montana is no longer performing

active surveillance. Informal active/passive surveillance continues and

linkages between ascertainment and services are in place and supported.

Data and program linkages exist between newborn hearing screening,

birth certificates, and newborn screening.

Contacts

MaryLynn Donnelly, RN

Children's Special Health Services

Mt. Dept.of Public Hlth and Human Services, PO Box 202951

Helena, MT, 59620-2951

Phone: 406-444-3620 Fax: 406-444-2750




Nebraska

Nebraska Birth Defects Registry

Purpose: Surveillance, We are in the process of exploring our policy on

expanding the use of the birth defects data

Partner: Hospitals, Early Childhood Prevention Programs, Nebraska

Department of Health and Human Services, Vital Statistics and MCH


Start year: 1973


Organizational location: Department of Health (Vital Statistics),

Department of Health (Nebraska Department of Health and Human

Services, Public Health, Office of Health Statistics)

Population covered annually: Statewide, 27,000 births annually

Statewide: Yes

Current legislation or rule: Laws 1972, LB 1203, §1, §2, §3, §4

(alternate citation: Public Health and Welfare [Codes] §71-645, §71-646,

§71-647, §71-648, §71-649)


Case Definition

Outcomes covered: All birth defects, exclusions according to CDC

exclusion list

Pregnancy outcome: Live Births (Greater than 20 weeks and greater than

500 grams), Fetal deaths - stillbirths, spontaneous abortions, etc. (20

weeks gestation and greater)

Age: Birth to 1 year

Residence: In-state and out-of-state birth to state resident.




certificates




summaries, ICU/NICU logs or charts



clinics



Case Ascertainment




certificate with a birth defect box checked, Infants with low birth weight

or low gestation, All neonatal deaths, All infants in NICU or special care

nursery, All prenatal diagnosed or suspected cases





(excluding prematurity), Childhood deaths between 1 and 6, Ocular

conditions, Auditory/hearing conditions, Any infant with a codable defect


Data Collected




information










Defects taken from paper copies of birth certificates submitted to the

Vital Statistics Office.

Database storage/management: Netsmart

Data Analysis

Data analysis software: SAS, Reports from Netsmart.

Quality assurance: Re-abstraction of cases, Double-checking of assigned

codes, Comparison/verification between multiple data sources, Case

finding, data coding and entry.

Data use and analysis: Baseline rates, Monitoring outbreaks and cluster

investigation, Epidemiologic studies (using only program data),


assessment, Grant proposals, Incidence rates, trend analysis, birth defect

registry.

System Integration

System links: Netsmart.

System integration: Integrated with births, fetal deaths, deaths and

hearing screening.

Funding


Other

Web site:

http://dhhs.ne.gov/publichealth/Pages/vitalrecords_partners.aspx

Surveillance reports on file:

http://dhhs.ne.gov/publichealth/Pages/ced_vs.aspx

Contacts

Nila Irwin

Nebraska Department of Health and Human Services

1033 O Street, Suite 130

Lincoln, Nebraska, 68509-5026

Phone: 402-471-0354 Fax: 402-742-2388




Nevada

Nevada Birth Outcomes Monitoring System (NBOMS)



Partner: Hospitals, Early Childhood Prevention Programs, Legislators,

Bureau of Child, Family, & Community Wellness


Start year: 2000



Health), State Health Division, Office of Health Statistics and

Surveillance, Bureau of Health Statistics, Planning, Epidemiology and

Response

Population covered annually: Nearly 40,000

Statewide: Yes

Current legislation or rule: NRS 442.300 - 442.330 - Birth Defects

Registry Legislation *** Regulation = NAC 442


Case Definition

Outcomes covered: Major birth defects and genetic diseases

Pregnancy outcome: Live Births (20 weeks of gestation and greater with

all birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (20

weeks gestation and greater), Elective Terminations (20 weeks gestation

and greater)

Age: Birth to 7 years of age

Residence: In-state births



ascertainment, Population based, Hospital based


file, Fetal death certificates, hospital medical records,

diagnostic/laboratory reports


Newborn metabolic screening program, Cancer registry


summaries, Obstetrics logs (i.e., labor & delivery), Pediatric logs,

Postmortem/pathology logs, Surgery logs, Cardiac catheterization

laboratories, Specialty outpatient clinics


Discharge summaries



Case Ascertainment



codes outside 740-759, Any birth certificate with a birth defect box

checked



CNS condition (e.g., seizure), GI condition (e.g., recurrent blockage), GU

condition (e.g., recurrent infections), Cardiovascular condition, Any


Coding: ICD-9-CM

Data Collected







Prenatal care, Prenatal diagnostic information, Pregnancy/delivery

complications, Maternal risk factors, Family history



Family history




Data Analysis


Quality assurance: Double-checking of assigned codes,

Comparison/verification between multiple data sources, Data/hospital

audits, Timeliness







Prevention projects

System Integration

System links: Link to other state registries/databases, Birth registry data

is manually linked to birth defect data, but the actual databases are not

linked.

Funding

Funding Source: 100% MCH Block Grant

Other


http://health.nv.gov/PUBLICATIONS/OHSS/2009_NBOMS_Annual_Re

port.pdf

Contacts

Prasanjit Chakma, MPH

NV Birth Outcomes Monitoring System, Office of Health

Statistics&Surveillance, BHSPER

3811 W. Charleston Blvd., Ste. 205

Las Vegas, NV, 89102

Phone: 702-486 9855 Fax: 702-486 0490


Brad Towle, MA, MPA

Office of Health Statistics and Surveillance (OHSS), Bureau of Health

Statistics, Planning, Epidemiology and Response (BHSP&ER)

4150 Technology Way, Suite 200

Carson City, Nevada, 89706

Phone: 775-684-4243




New Hampshire

New Hampshire Birth Conditions Program (NHBCP)







Start year: 2003



Health), Department of Health (Bureau of Special Medical Services:

Bureau of Nutrition and Health Promotion, Department of Environmental

Services Bureau of Environmental Health), University


Statewide: Yes

Current legislation or rule: RSA 141:J, NH Administrative Rules He-P

3012


Case Definition

Outcomes covered: all major birth defects and genetic diseases

recommended by the CDC/NBDPN




Age: Currently collecting birth to age 2

Residence: All New Hampshire residents, those born in-state as well as

out of state



Vital Records: Birth certificates, Fetal death certificates, Elective

termination certificates, hospital ICD-9 codes for admissions, discharges

and transports, fetal pathology reviews at Dartmouth Hitchcock Medical

Center


Newborn hearing screening program

Delivery hospitals: Discharge summaries, Obstetrics logs (i.e., labor &

delivery), Regular nursery logs, ICU/NICU logs or charts,

Postmortem/pathology logs, Specialty outpatient clinics, medical records

abstraction of charts of selected ICD 9 Codes

Pediatric & tertiary care hospitals: Discharge summaries, ICU/NICU

logs or charts, Postmortem/pathology logs, Specialty outpatient clinics,

cytogenetics laboratory, perinatal pathology logs, Medical Genetics

Clinic files, molecular genetics laboratory, Prenatal Diagnosis Program

files



Case Ascertainment






infants, All neonatal deaths, All infants in NICU or special care nursery,

All prenatal diagnosed or suspected cases, elective terminations that have

confirmed birth conditions by autopsy or confirmed by clinical

assessment




Data Collected




information





Father: Identification information (name, address, date-of-birth, etc.)



file/report filled out by staff at facility (laptop, web-based, etc.)

Database storage/management: Oracle, AURIS, a web-based reporting

system currently utilized by the NH DHHS Newborn Hearing Screening

Program, has added a module to the currently operating system to meet

the birth defects tracking requirements.

Data Analysis

Data analysis software: SPSS, Access



data sources, Clinical review



variables, Observed vs. expected analyses, Epidemiologic studies (using

only program data), Service delivery, Grant proposals, Education/public

awareness, Prevention projects

System Integration


System integration: Integrated into the NH DHHS Newborn Hearing

Screening Program registry, a state-wide universal hearing program for

all NH infants. This system also receives weekly uploads from the State's

Vital Records system that is then linked with the birth conditions and

newborn screening data. In addition, in 2011 the NH Birth Conditions

Program database was linked with the Title V program database with data

on children receiving Special Medical Services in NH.

Funding

Funding Source: 100% CDC grant

Other

Web site: www.nhbcp.org

Contacts

John B. Moeschler, MD, MS

Division of Genetics and Child Development, Dept. of

PediatricsDartmouth Hitchcock Medical Center

1 Medical Center Drive

Lebanon, NH, 03756

Phone: 603-653-6053 Fax: 603-650-8268


Stephanie D. Miller, RN, MSN, MPH

NH Birth Conditions Program - Dartmouth Medical School

1 Medical Center Drive

Lebanon, NH, 03756

Phone: 603-653-3163 Fax: 603-653-0712




New Jersey

Special Child Health Services Registry (SCHS REGISTRY)





Childhood Prevention Programs, Advocacy Groups, Legislators,

Neurodevelopmental Centers; Federally Qualified Health Care Centers


Start year: 1928


Organizational location: Department of Health - Special Child, Adult,

and Early Intervention Services


Statewide: Yes

Current legislation or rule: NJSA 26:8-40.20 et seq., NJAC 8:20 -

Amended: 1990, 1991, 1992, 2005, Readopted: 2010, Rule Amendments

Adopted: 2009; Re-adopted 2010


Case Definition

Outcomes covered: All birth defects (structural, genetic, and

biochemical), all Autism Spectrum Disorders, and severe

hyperbilirubinemia, are required to be reported; all special needs and any

condition which places a child at risk (prematurity, asthma, cancer,

developmental delay) are also reported but not required.


Age: Mandated reporting of birth defects diagnosed through age 5,

voluntary reporting of birth defects diagnosed > age 6 and all children

diagnosed with Special Needs conditions who are 22 years or younger

Residence: All NJ residents, in and out of state





file



program, Autism Registry




Surgery logs, Cardiac catheterization laboratories, Specialty outpatient

clinics, quality assurance visit consisting of chart review of 3 month

period



Postmortem/pathology logs, Surgery logs, Laboratory logs, Cardiac

catheterization laboratories, Specialty outpatient clinics, quality assurance

visit consisting of chart review of 3 month period


Third party payers: Universal Billing database is used for Quality

Assurance activities



Other sources: Physician reports, Special Child Health Services county

based Case Management units, parents, medical examiners, Autism

diagnosticians and treatment centers.

Case Ascertainment



codes outside 740-759, All neonatal deaths, all death certificates for < 3

year of age

Conditions warranting chart review beyond the newborn period: GI

condition (e.g., recurrent blockage), GU condition (e.g., recurrent

infections), Cardiovascular condition, All infant deaths (excluding

prematurity), Ocular conditions, Any infant with a codable defect

Coding: ICD-9-CM

Data Collected




information










implementation of a web-based reporting ongoing since July 1, 2009

Database storage/management: Mainframe, SAS; SQL

Data Analysis




audits, Clinical review, Timeliness, merge registry with birth certificate

registry and the death certificate registry



variables, Monitoring outbreaks and cluster investigation, Epidemiologic

studies (using only program data), Identification of potential cases for

other epidemiologic studies, Needs assessment, Service delivery,


projects

System Integration


data to final birth file, link to hearing screening registry

System integration: Newborn hearing screening registry provides direct

report to SCHS Registry. Metabolic screening program provides direct

report to SCHS Registry. Autism Registry is included in the Registry.

Funding

Funding Source: 90% MCH funds, 10% CDC grant

Contacts

Leslie M. Beres-Sochka, MS, Hyg

SCHEIS, New Jersey Department of Health

PO Box 364, Trenton, NJ, 08625-0364

Phone: 609-292-5676 Fax: 609-633-7820


Mary M. Knapp, MSN

New Jersey Department of Health

PO Box 364, Trenton, NJ, 08625-0364

Phone: 609-292-5676 Fax: 609-633-7820




New Mexico

New Mexico Birth Defects Prevention and Surveillance System (NM BDPASS)




Early Childhood Prevention Programs, Advocacy Groups, Legislators,

Private providers


Start year: 1995



(Epidemiology/Environment), Department of Health (Maternal and Child

Health)


Statewide: Yes

Current legislation or rule: In January 2000, birth defects became a

reportable condition. These conditions are updated by the Office of

Epidemiology. This did not involve legislation, only a change in

regulations.

Legislation year enacted: January 1, 2000

Case Definition

Outcomes covered: 740-760.71, Currently focused on major birth defects

of interest to Environmental Public Health Tracking.




Age: Birth through age 4 years

Residence: Births to New Mexico residents.




certificates



program

Delivery hospitals: Disease index or discharge index, medical chart

review


Specialty outpatient clinics, specialty outpatient clinics, including

neurosurgery, plastic surgery, pediatric surgical specialists, prenatal

diagnostic providers

Third party payers: Medicaid databases, Health maintenance

organization (HMOs), Indian health services, Children’s Medical

Services (CMS)


Cytogenetic laboratories


Case Ascertainment

Conditions warranting chart review in newborn period: Chart reviews

only done to clarify birth defect diagnosis identified through other means,

e.g., nonspecific diagnosis such as 749

Coding: CDC coding system based on BPA, ICD-9-CM, ICD10 for

deaths

Data Collected


etc.), Demographic information (race/ethnicity, sex, etc.), Birth defect







Database storage/management: Stata

Data Analysis

Data analysis software: Stata





cluster investigation, Grant proposals, Education/public awareness,

Prevention projects

System Integration


data to final birth file, Link to environmental databases, Link to death file

Funding

Funding Source: 100% CDC grant; At this point, the only funding for

birth defects surveillance is from Environmental Public Health Tracking

grant. We are actively seeking resources to support this effort.

Other

Web site:

https://nmtracking.unm.edu/health_effects/birthdefects/about_birthdefects

Contacts

Heidi Krapfl, MS

NM Department of Health

1190 St. Francis Drive, Suite N1304

Santa Fe, NM 87502

Phone: 505-476-3577 Fax: 505-827-0013




New York

New York State Congenital Malformations Registry (CMR)


Prevention/Intervention, Community outreach and education


March of Dimes


Start year: 1982




Population covered annually: 250,000 - 300,000

Statewide: Yes

Current legislation or rule: Public Health Law Art. 2, Title, II, Sect

225(5)(t) and Art. 2 Title I, sect 206(1)(j): Codes, Rules and

Regulations,Chap 1, State Sanitary Code, part 22.3


Case Definition

Outcomes covered: Major malformations - a detailed list is available

upon request


Age: 2 years

Residence: In-state and out-of-state birth to state resident; in-state birth to

nonresident; all children born in or residing in New York, up to age 2




Other state based registries: NYS Dept. of Health statewide hospital

discharge database





clinics




catheterization laboratories, Specialty outpatient clinics

Other specialty facilities: Cytogenetic laboratories

Other sources: Physician reports, Cytogenetic laboratories

Case Ascertainment

Conditions warranting chart review in newborn period: Charts with

major malformations - a detailed list is available upon request




Data Collected











(hospitals, etc.)

Database storage/management: Access, Sybase

Data Analysis

Data analysis software: SAS, Access, JAVA



audits, Timeliness



cluster investigation, Time trends, Time-space cluster analyses, Capture-

recapture analyses, Observed vs. expected analyses, Epidemiologic

studies (using only program data), Identification of potential cases for

other epidemiologic studies, Needs assessment, Service delivery,


projects

System Integration


data to final birth file, Link to environmental databases

Funding

Funding Source: 13.6% General state funds, 10.2% MCH funds, 3.4%

Genetic screening revenues, 50.2% CDC grant, 13.3% Other federal

funding (non-CDC grants), 9.3% State Superfund

Other

Web site:

http://www.health.state.ny.us/diseases/congenital_malformations/cmrhom

e.htm

Surveillance reports on file: Reports for 1983-2007

Contacts

Charlotte M. Druschel, MD, MPH

New York Department of Health

Empire State Plaza - Corning Tower, Room 1203

Albany, NY 12237

Phone: 518-402-7771 Fax: 518-402-7769


Ying Wang, PhD, MPH

New York Department of Health

Empire State Plaza - Corning Tower, Room 1203

Albany, NY 12237

Phone: 518-402-7716 Fax: 518-402-7723




North Carolina

North Carolina Birth Defects Monitoring Program (NCBDMP)


Prevention/Intervention, Education, Advocacy





Start year: 1987


Organizational location: Department of Health (State Center for Health

Statistics)


Statewide: Yes

Current legislation or rule: NCGS 130A-131


Case Definition

Outcomes covered: Major birth defects



and greater), Elective Terminations (all gestational ages)


Residence: NC resident births, in-state and out-of-state occurrence







summaries, Obstetrics logs (i.e., labor & delivery), Specialty outpatient

clinics



clinics



Genetic counseling/clinical genetics facilities

Case Ascertainment




birth certificate with a birth defect box checked, All stillborn infants, All

prenatal diagnosed or suspected cases




Data Collected















(hospitals, etc.)

Database storage/management: Access, Mainframe, SAS

Data Analysis

Data analysis software: SAS, Access, Various software for spatial

analyses



data sources, Clinical review, Timeliness






potential cases for other epidemiologic studies, Service delivery, Referral,

Grant proposals, Education/public awareness, Prevention projects,

advocacy

System Integration


data to final birth file, Link to environmental databases, Vital Statistics,

Medicaid Paid Claims, MCH Program Data

Funding


Other

Web site: http://www.schs.state.nc.us/SCHS/bdmp/

Contacts

Robert E. Meyer, PhD

North Carolina Center for Health Statistics

1908 Mail Service Center

Raleigh, NC, 27699-1908

Phone: 919.733.4728 Fax: 919.715.4489


Jennifer Stock

North Carolina Center for Health Statistics

1908 Mail Service Center

Raleigh, NC, 27699-1908

Phone: 919.715.0263 Fax: 919.715.4489




North Dakota

North Dakota Birth Defects Monitoring System (NDBDMS)


Partner: Universities, March of Dimes


Start year: 2002


Organizational location: Department of Health (Vital Statistics),

Department of Health (Maternal and Child Health), Department of Health

(Children's Special Health Services)

Population covered annually: 9234

Statewide: Yes

Current legislation or rule: North Dakota Century code 23-41


Case Definition

Outcomes covered: Selected birth defects (NTDs, congenital heart

defects, cleft lip and palate, chromosomal anomalies) and other risk

factors that may lead to health and developmental problems

Pregnancy outcome: Live Births (all gestational ages and birth weights,

numbers collected and reported via Vital Records), Fetal deaths -

stillbirths, spontaneous abortions, etc. (20 weeks gestation and greater,

numbers collected and reported via Vital Records), Elective Terminations

(less than 20 week gestation, 20 weeks gestation and greater, numbers

collected and reported via Vital Records)

Age: Newborn period

Residence: In-state resident births and out of state birth receiving services

in ND







program, Cancer registry, AIDS/HIV registry, FAS

Delivery hospitals: Birth certificate completion

Pediatric & tertiary care hospitals: Specialty outpatient clinics



Case Ascertainment





Coding: ICD-9-CM, ICD 10

Data Collected















Database storage/management: Access, Mainframe, DB2, SPSS, Excel

Data Analysis

Data analysis software: SPSS, Access


Comparison/verification between multiple data sources, Clinical review


Rates by demographic and other variables, Time trends, Epidemiologic


Referral, Grant proposals, Education/public awareness

System Integration


System integration: The program/system/registry is integrated with birth,

death, fetal death, Medicaid claims payment and Children with Special

Healthcare Needs databases.

Funding

Funding Source: 100% from the State System Development Initiative

(SSDI) Grant

Other

Web site: http://www.ndhealth.gov/cshs/

Surveillance reports on file: North Dakota Birth Defects Monitoring

System -Summary Report 2001-2005

Contacts

Devaiah Muthappa Muccatira, MS

ND Department of Health, Childrens Special Health Services

Division

600 East Boulevard Avenue, Dept. 301

Bismarck, ND, 58505-0200

Phone: 701-328-4963 Fax: 701-328-1645


Tamara Lynn Gallup-Millner, RN, MPA

ND Department of Health, Childrens Special Health Services Division

600 East Boulevard Avenue, Dept. 301

Bismarck, ND, 58505-0200

Phone: 701-328-4814 Fax: 701-328-1645




Ohio

Ohio Connections for Children with Special Needs (OCCSN)





Programs, Advocacy Groups, Legislators, Title V CSHCN, Ohio Hospital

Association


Start year: 2006



Health)


Statewide: Yes

Current legislation or rule: Ohio Revised Code (ORC) 3705.30 -

3705.36, signed into law in July, 2000. "The Director of Health shall

establish and, if funds for this purpose are available, implement a

statewide birth defects information system for the collection of

information concerning congenital anomalies, stillbirths, and abnormal

conditions of newborns." Ohio Administrative Code (OAC) 3701-57-01

to 3701-57-04.revised 2010


Case Definition

Outcomes covered: Major birth defects recommended by NBDPN,

disorders on state newborn bloodspot panel, disorders related to infant

hearing loss



and greater)


Residence: Ohio children 0 to 5 years of age seen for medical care at a

hospital in Ohio; all in and out of state births and fetal deaths to state

residents


Case ascertainment: Passive case ascertainment, and passive case

ascertainment with follow-up for certain disorders.


file, Fetal death certificates (20 weeks gestation and greater)


Newborn metabolic screening program, Title V CSHCN Program data,

Genetics Program Data System, Part C Early Intervention System Data,

Newborn Bloodspot Screening Data

Delivery hospitals: Hospital data for medical records and billing

Pediatric & tertiary care hospitals: Hospital data for medical records and

billing


Case Ascertainment

Conditions warranting chart review in newborn period: Any birth

certificate with a birth defect box checked, ICD-9-CM, ICD-10 (death

certificates), or named congenital anomaly

Coding: ICD-9-CM

Data Collected









(hospitals, etc.), Reporting hospitals upload CSV flat file to secure

website for integration. Low volume reporters can manually key data into

user interface on secure internet site.

Database storage/management: SQL 2008 server. External system data

methods and storage: ODBC connection with SAS. SAS import of other

data sets and merge export of cohort line lists to MS Excel (follow-up)

Data Analysis

Data analysis software: SAS, MS Excel, FRIL


multiple data sources, Clinical review, Timeliness


program evaluation, Baseline rates, Observed vs. expected analyses,

Epidemiologic studies (using only program data), Referral, Grant

proposals, Education/public awareness, Prevention projects, IRB

approved research projects

System Integration


System integration: OCCSN data system shares common demographic

file with Vital Statistics and Genetics Program data system

Funding

Funding Source: 25% Genetic screening revenues, 75% CDC grant

Other

Web site:

http://www.odh.ohio.gov/odhPrograms/cmh/bdefects/birthdefects1.aspx

Contacts

Anna Starr, BS

Ohio Department of Health

246 N. High Street

Columbus, OH, 43216-0118

Phone: 614-995-5333 Fax: 614-728-9163


Norma Ryan, PhD

Ohio Dept. of Health

246 N. High Street

Columbus, OH, 43215

Phone: 614-752-9523 Fax: 614-564-2504


Richard Thomas, MPH

Birth Defects Epidemiologist

Ohio Department of Health

Center for Public Health Statistics & Informatics

246 N. High Street

Columbus, Ohio 43215

Phone: 614-466-0269




Oklahoma

Oklahoma Birth Defects Registry (OBDR)




Childhood Prevention Programs, Advocacy Groups, Legislators,

Cytogenetics/ & Medical Genetics


Start year: 1992; statewide 1994

Earliest year of available data: 1992; 1994 statewide

Organizational location: Department of Health (Prevention and

Preparedness)


Statewide: Yes

Current legislation or rule: 63 O.S. Section 1-550.2


Case Definition

Outcomes covered: Modified 6-digit ICD-9-CM codes for birth defects

and genetic diseases (CDC/BPA)

Pregnancy outcome: Live Births (≥ 20 weeks gestation), Fetal deaths -

stillbirths, spontaneous abortions, etc. (20 weeks gestation and greater),

Elective Terminations (20 weeks gestation and greater)

Age: 2 years

Residence: In-state births to state residents




certificates





ICU/NICU logs or charts, Pediatric logs, Surgery logs, Specialty

outpatient clinics


Discharge summaries, ICU/NICU logs or charts, Pediatric logs, Surgery

logs, Specialty outpatient clinics


Third party payers: Indian health services, military hospitals delivering

babies



Case Ascertainment



codes outside 740-759, Any chart with a CDC/BPA code




Data Collected




information










Data Analysis

Data analysis software: SAS, Access, ArcView GIS


checking of assigned codes, Timeliness, editing of all completed abstracts



cluster investigation, Time trends, Time-space cluster analyses, Needs

assessment, Referral, Grant proposals, Education/public awareness,

Prevention projects, program quality assurance

Funding

Funding Source: 13% General state funds, 57% MC funds, 30% CDC

grant

Other

Web site:

http://www.ok.gov/health/Child_and_Family_Health/Screening,_and_Sp

ecial_Services/

Contacts

Sharon Vaz, MS

Oklahoma State Department of Health; Screening and Special

Services

1000 NE 10th Street, Room 709

Oklahoma City, OK, 73117-1299

Phone: 405-271-6617 Fax: 405-271-4892




Oregon

Birth Anomalies Registry (BAR)


Partner: Environmental Agencies/Organizations, Advocacy Groups,

Legislators

Program status: Program has not started collecting data yet

Start year: 2012?

Earliest year of available data: 2010?


Health)


Statewide: Yes

Current legislation or rule: None

Case Definition

Outcomes covered: EPHT-12 (Anencephalus, Spina bifida without

anencephalus, Transposition of great arteries, Tetralogy of Fallot,

Hypoplastic left heart syndrome, Cleft lip with and without cleft palate,

Cleft palate without cleft lip, Upper limb defect, Lower limb defect,

Gastroschisis, Down syndrome, Hypospadias)


Age: 0-1 now

Residence: In-state births to state residents?


Case ascertainment: Link birth certificate to hospital discharge dataset


Delivery hospitals: Discharge summaries, Dataset of all state hospital

discharges

Pediatric & tertiary care hospitals: Discharge summaries

Data Collected

Infant/fetus: Birth defect diagnostic information



Illnesses/conditions, Prenatal care



Data Analysis

Data use and analysis: Routine statistical monitoring

System Integration


Funding

Funding Source: 20% MCH funds, 80% EPHT

Contacts

Kenneth D. Rosenberg, MD, MPH

Oregon Public Health Division

800 NE Oregon Street, Suite 850

Portland, OR, 97232

Phone: 971-673-0237 Fax: 971-673-0240


Pennsylvania

Pennsylvania Birth Defects Surveillance Database


Contacts

Ronald A. Tringali, PhD

PA Department of Health, Bureau of Epidemiology

933 Health & Welfare Building, Commonwealth Avenue & Forster Street

Harrisburg, PA, 17120

Phone: (717) 787-3350 Fax: (717) 772-6975




Puerto Rico

Puerto Rico Birth Defects Surveillance and Prevention System (PRBDSS)





Groups


Start year: 1995



Health)


Statewide: Yes

Current legislation or rule: Yes, Law 351

Legislation year enacted: September 16th, 2004

Case Definition

Outcomes covered: Selected birth defects - neural tube defects, cleft lip

and/or cleft palate, talipes equinovarus, limb defects, ventral wall defects,

ambiguous genitalia, trisomy 13, 18 and 21, albinism, congenital heart

defects, hipos/epispadias, Jarcho-Levin syndrome, anotia, microtia,

anophthalmia, microphthalmia and bladder extrophy.




Age: Up to 6 years after delivery

Residence: In-state birth to state residents




certificates



program

Delivery hospitals: Discharge summaries, Obstetrics logs (i.e., labor &

delivery), Regular nursery logs, ICU/NICU logs or charts, Pediatric logs,

Postmortem/pathology logs, Surgery logs, Specialty outpatient clinics

Pediatric & tertiary care hospitals: Discharge summaries, ICU/NICU

logs or charts, Pediatric logs, Postmortem/pathology logs, Surgery logs,

Laboratory logs

Third party payers: Medicaid databases, Health maintenance

organization (HMOs)


Cytogenetic laboratories


Case Ascertainment





congenital heart disease), Any birth certificate with a birth defect box

checked, All stillborn infants, All neonatal deaths, All elective abortions,

All infants in NICU or special care nursery, All prenatal diagnosed or

suspected cases



condition, All infant deaths (excluding prematurity), Ocular conditions,


Coding: ICD-9-CM

Data Collected







Prenatal diagnostic information





abstract/report submitted by other agencies (hospitals, etc.)


Data Analysis

Data analysis software: SPSS







Time-space cluster analyses, Epidemiologic studies (using only program

data), Identification of potential cases for other epidemiologic studies,

Needs assessment, Service delivery, Referral, Grant proposals,

Education/public awareness, Prevention projects

Funding


Other

Web site: http://www.salud.gov.pr

Surveillance reports on file: PR Birth Defects Databook 2012

Contacts

Mónica R. Castellano Vega, MS

Puerto Rico Birth Defects Surveillance and Prevention System, PR

Department of Health

PO Box 70184

San Juan, PR, 00936

Phone: 787-765-2929 X-4571 Fax: 787-764-4259




Rhode Island

Rhode Island Birth Defects Program



Partner: Universities, Hospitals, Community Nursing Services,


Programs, Advocacy Groups, families


Start year: 2000


Organizational location: Department of Health (Center for Health Data

and Analysis)


Statewide: Yes

Current legislation or rule: Title 23, Chapter 13.3 of Rhode Island

General Laws requires the development of a birth defects surveillance,

reporting and information system that will: a) describe the occurrence of

birth defects in children up to age five; b) detect trends of morbidity and

mortality; and c) identify newborns and children with birth defects to

intervene on a timely basis for treatment.


Case Definition



Elective Terminations (20 weeks gestation and greater)

Age: Birth-4 years

Residence: RI residents


Case ascertainment: Active case ascertainment


file



program, RI has an integrated child health information system called

KIDSNET, which links data from 9 programs including: Newborn

Developmental Risk Screening; Universal Newborn Hearing; Newborn

Bloodspot Screening; Early Intervention; Immunization; Lead Poisoning;

WIC; Home Visiting and Vital Records

Delivery hospitals: Discharge summaries


outpatient clinics





Case Ascertainment



codes outside 740-759, Chart reviews are conducted for infants born at

the regional perinatal center and 3 community hospitals (represents 90%

of newborns with birth defects) who were identified with an ICD-9 code

740-759 and other sentinel conditions



Coding: ICD-9-CM

Data Collected
















Data Analysis







cluster investigation, Time trends, Epidemiologic studies (using only

program data), Needs assessment, Service delivery, Referral, Grant

proposals, Education/public awareness, Prevention projects

System Integration

System links: Link to other state registries/databases, Link to KIDSNET

(Newborn Developmental Risk Screening; Universal Newborn Hearing;

Newborn Bloodspot Screening; Early Intervention; Immunization; Lead

Poisoning; WIC; Home Visiting; and Vital Records); hospital discharge

database

System integration: Integrated into KIDSNET for web-based provider

reporting

Funding


Other

Web site: http://www.health.ri.gov/family/birthdefects/index.php

Surveillance reports on file: 2010 Rhode Island Birth Defects Data Book

Comments: Chart reviews are also conducted for ICD-9-CM codes 740-

759 and other sentinel conditions after the newborn period from sources

such as, genetics counseling and testing centers.

Contacts

Samara Viner-Brown, MS

Rhode Island Department of Health

3 Capitol Hill, Room 407

Providence, RI, 02908-5097

Phone: 401-222-5122 Fax: 401-222-4415


William Arias, MPH

Rhode Island Department of Health

3 Capitol Hill, Room 407

Providence, RI, 02908

Phone: 401-222-7930 Fax: 401-222-4415




South Carolina

South Carolina Birth Defects Program (SCBDP)

Purpose: Surveillance, Research, Referral to Prevention/Intervention



Programs, Advocacy Groups, Greenwood Genetic Center (GGC)


Start year: GGC began monitoring in 1992; transitioned to SC DHEC

and expanded in 2006

Earliest year of available data: Via GGC, for 3 categories of defects,

since 1993


Health)


Statewide: Yes

Current legislation or rule: A281,R308,H4115


Case Definition

Outcomes covered: Neural tube defects, cardiovascular defects,

musculoskeletal defects, orofacial clefts




Age: Up to two years of age

Residence: Currently monitoring in-state births to persons residing in

South Carolina


Case ascertainment: Active case ascertainment


file, Fetal death certificates, Elective termination certificates



program, Cancer registry, Autopsy


summaries, Postmortem/pathology logs, ICD-9 codes


Discharge summaries, ICD-9 codes




Case Ascertainment




conditions (e.g., abnormal facies, congenital heart disease), birth

certificate with neural tube defect box checked, All stillborn infants, All

elective abortions, All prenatal diagnosed or suspected cases



Coding: ICD-9-CM

Data Collected








Pregnancy/delivery complications



file/report filled out by staff at facility (laptop, web-based, etc.)


Data Analysis











projects

System Integration

System links: Link case finding data to final birth file, Link to

environmental databases, SC Vital Records

System integration: SC Vital Records

Funding


Contacts

Brenda Martin, MN

SC Birth Defects Program, SC Dept of Health & Environmental

Control

1751 Calhoun St.

Columbia, SC, 29201

Phone: 803-898-3780 Fax: 803-898-2065


Kimberly Jenkins, BSN

SC DHEC

1751 Calhoun Street

Columbia, SC, 29201

Phone: 803-360-1039 Fax: 803-898-2065


South Dakota


Contacts

Darlene Bergeleen, BS, RN

SD Dept Health

600 E. Capitol Ave.

Pierre, SD, 57501

Phone: 605-773-3737 Fax: 605-773-5683




Tennessee

Tennessee Birth Defects Registry (TBDR)




Childhood Prevention Programs, Advocacy Groups, Legislators


Start year: 2000


Organizational location: Department of Health (Division of Policy,

Planning & Analysis)


Statewide: Yes

Current legislation or rule: TCA 68-5-506


Case Definition

Outcomes covered: 45 major structural birth defects


Fetal deaths - stillbirths, spontaneous abortions, etc. (500 grams or more,

or in the absence of weight, 22 completed weeks of gestation or more)





Hospital based, Active medical record reviews at five regional perinatal

center hospitals.




Newborn metabolic screening program, Hospital Discharge Data System





clinics


Discharge summaries, ICU/NICU logs or charts, Pediatric logs, Surgery

logs, Laboratory logs, Cardiac catheterization laboratories, Specialty

outpatient clinics

Case Ascertainment


a ICD9-CM code 740-759, Any chart with selected procedure codes, Any

chart with selected defects or medical conditions (e.g., congenital heart

disease, musculoskeletal defects, Chromosomal anomalies), All stillborn

infants, ICD-9-CM code 760.71



Coding: ICD-9-CM

Data Collected















Database storage/management: Access, SQL Server

Data Analysis

Data analysis software: SAS, Access, SQL Server, Arc-GIS



data sources, Data/hospital audits



cluster investigation, Time trends, Epidemiologic studies (using only


studies, Needs assessment, Education/public awareness, Prevention

projects

System Integration



Funding


Other

Web site: http://hit.state.tn.us/Reports.aspx

Surveillance reports on file: Tennessee Birth Defects Registry 2004-

2008

Contacts

David J. Law, Ph.D.

TN Dept. of Health - PPA

425 Fifth Avenue North, 6th Flr.

Nashville, TN, 37247

Phone: 615-253-4702 Fax: 615-253-1688




Texas

Texas Birth Defects Epidemiology and Surveillance Branch (TBDES)



Partner: Universities, Hospitals, Advocacy Groups


Start year: 1994




Population covered annually: 401,599 in 2009

Statewide: Yes

Current legislation or rule: Health and Safety Code, Title 2, Subtitle D,

Section 1, Chapter 87.


Case Definition

Outcomes covered: All major structural birth defects and fetal alcohol

syndrome




Age: Up to one year after delivery - FAS up to 6 years



Case ascertainment: Combination of active and passive case ascertainment,

Population based

Vital Records: We are now using fetal death certificates (2009+) to aid in

case finding.


Obstetrics logs (i.e., labor & delivery), Regular nursery logs, ICU/NICU

logs or charts, Pediatric logs, Postmortem/pathology logs, Surgery logs,

Cardiac catheterization laboratories, Specialty outpatient clinics, genetics

logs, stillbirth logs, radiology logs




catheterization laboratories, Specialty outpatient clinics, genetics logs,

radiology logs


Other sources: Licensed birthing centers, reference labs

Case Ascertainment

Conditions warranting chart review in newborn period: Any chart with a

ICD9-CM code 740-759, Any chart with a selected list of ICD9-CM codes

outside 740-759, Any chart with selected procedure codes, Any chart with


heart disease), Infants with low birth weight or low gestation (<34 weeks

GA), All stillborn infants

Conditions warranting chart review beyond the newborn period: CNS

condition (e.g., seizure), GI condition (e.g., recurrent blockage), GU

condition (e.g., recurrent infections), Cardiovascular condition, Any infant

with a codable defect


Data Collected



(weight, gestation, Apgars, etc.), Tests and procedures, Infant

complications, Birth defect diagnostic information




complications, Family history, Prenatal care





Database storage/management: SQL Server migrating to Oracle in Fall

2012.

Data Analysis



checking of assigned codes, Clinical review, Timeliness, Re-casefinding,

Re-review of medical records

Data use and analysis: Routine statistical monitoring, Baseline rates, Rates

by demographic and other variables, Monitoring outbreaks and cluster

investigation, Time trends, Time-space cluster analyses, Observed vs.


Identification of potential cases for other epidemiologic studies, Referral,

Grant proposals, Education/public awareness, Prevention projects

System Integration

System links: Link to other state registries/databases, Link to environmental

databases, link registry to vital records for demographic data, special

projects linking to other files (Texas Health Data for geocodes, Newborn

Screening data)

Funding

Funding Source: 46% General state funds, 54% MCH funds * Note: does

not include CDC-funded Texas Birth Defects Research Center funds

Other

Web site: www.dshs.state.tx.us/birthdefects/

Comments: In order to maintain efficiency with increasing workloads; we

stopped the routine review and abstraction of mother’s medical records (we

still occasionally abstract specific information from the mother’s record

when it’s needed and can’t be found elsewhere) and that change only

applies to live born cases (we still routinely review and abstract information

from mother’s medical records for other pregnancy outcomes).

Contacts

Mark A. Canfield, PhD

Birth Defects Epidemiology and Surveillance Branch

Texas Department of State Health Services

P.O. Box 149347, Mail code 1964

Austin, TX, 78714-9347

Phone: 512-776-7232 Fax: 512-776-7330


Lisa K. Marengo, MS

Birth Defects Epidemiology and Surveillance Branch

Texas Department of State Health Services

P.O. Box 149347, Mail code 1964

Austin, TX, 78714-9347

Phone: 512-776-6657 Fax: 512-776-7330




Utah

Utah Birth Defect Network (UBDN)


Prevention/Intervention, Education


Advocacy Groups, Legislators


Start year: 1994


Organizational location: Department of Health (CSHCN), University of

Utah


Statewide: Yes

Current legislation or rule: Birth Defect Rule (R398-5)


Case Definition

Outcomes covered: Major structural malformations; newborn metabolic

conditions; stillbirths




Age: 2 years based on mandatory reporting

Residence: Maternal residence in Utah at time of delivery




Vital Records: Birth certificates, Death certificates, Fetal birth certificate



ICU/NICU logs or charts, Postmortem/pathology logs, Specialty

outpatient clinics, Champions report live births delivered at their

respective hospitals


Discharge summaries, ICU/NICU logs or charts, Postmortem/pathology

logs, Surgery logs, Cardiac catheterization laboratories, Specialty

outpatient clinics




Other sources: Physician reports, lay midwives

Case Ascertainment





heart disease), Any birth certificate with a birth defect box checked, All

stillborn infants, All neonatal deaths, All infants in NICU or special care

nursery, All prenatal diagnosed or suspected cases, all fetal deaths

certificates, NICU reports, infant deaths are reviewed



condition, All infant deaths (excluding prematurity), Childhood deaths

between 1 and 6, Any infant with a codable defect


Data Collected











Family history




file/report filled out by staff at facility (laptop,web-based, etc.), Electronic



Data Analysis




data sources, Clinical review, Timeliness, Logical checks, Duplicate

check in tracking and surveillance module, Case record form checked for

completeness, Timeliness through system, Manual review of subset of

surveillance module case data compared to case record form.




Identification of potential cases for other epidemiologic studies, Referral,

Grant proposals, Education/public awareness, Prevention projects, Oral

Facial Cleft Case-Control Study, UT Center for Birth Defects Research

and Prevention

System Integration

System links: Link to environmental databases, Link to Utah genealogic

population database

Funding

Funding Source: 82% General state funds, 18% Other federal funding

(non-CDC grants), CDC-EHTP

Other

Web site: http://www.health.utah.gov/birthdefect/

Surveillance reports on file: http://ibis.health.utah.gov/

Additional information on file: Scientific Collaboration Protocol

Comments: IBIS indicators for specific birth defects are on-line.

Contacts

Marcia Lynn Feldkamp, PhD

Utah Birth Defect Network

44 N Mario Capecchi Drive, P.O. Box 144699

Salt Lake City, UT, 84114-4699

Phone: 801-584-8490 Fax: 801-883-4668


Amy E. Nance, MPH

Utah Birth Defect Network

44 N Mario Capecchi Drive, P.O. Box 144699

Salt Lake City, UT, 84114-4699

Phone: 801-883-4661 Fax: 801-883-4668




Vermont

Birth Information Network (BIN)


Prevention/Intervention, Prevention education

Partner: Local Health Departments, Hospitals, Environmental

Agencies/Organizations, Early Childhood Prevention Programs,

Advocacy Groups, Vermont Department of Financial Regulation, VT

Association of Hospitals and Health Systems.


Start year: 2006


Organizational location: Department of Health (Statistics)


Statewide: Yes

Current legislation or rule: Act 32 (TITLE 18 VSA §5087)


Case Definition

Outcomes covered: Major birth defects and genetic diseases, very low

birth weight (less than 1500 grams), hearing loss







file



program

Delivery hospitals: Discharge summaries, Specialty outpatient clinics


outpatient clinics


Other sources: Physician reports from offices and clinics associated with

Tertiary Care Hospital, Autopsy reports from Office of the Chief Medical

Examiner

Case Ascertainment



heart disease), Any birth certificate with a birth defect box checked



Coding: ICD-9-CM

Data Collected







Illnesses/conditions, Prenatal care, Maternal risk factors






(hospitals, etc.)


Data Analysis

Data analysis software: SPSS, Access, Excel

Quality assurance: Comparison/verification between multiple data

sources, Data/hospital audits, Clinical review, Timeliness


Monitoring outbreaks and cluster investigation, Observed vs. expected

analyses, Referral, Grant proposals, Prevention projects, Education/public

awareness

System Integration


data to final birth file, Link to environmental databases

Funding

Funding Source: 100% CDC grant

Contacts

Peggy Brozicevic

Vermont Department of Health

P.O. Box 70, 108 Cherry Street

Burlington, VT, 05402

Phone: 802-863-7298 Fax: 802-865-7701


Brennan Martin

Vermont Department of Health

P.O. Box 70, 108 Cherry Street

Burlington, VT, 05402

Phone: 802-863-7611 Fax: 802-865-7701




Virginia

Virginia Congenital Anomalies Reporting and Education System (VACARES)


Partner: Universities, Hospitals, Children with Special Health Care

Needs, Care Connection for Children Network


Start year: 1985


Organizational location: Department of Health (Division of Child and

Family Health, Child Health Programs, Genetics and Newborn

Screening)


Statewide: Yes

Current legislation or rule: Health Law 32.1-69.1,-69.1:1,-69.2

Legislation year enacted: 1985, ammended 1986, 1988, 2006

Case Definition



Fetal deaths - stillbirths, spontaneous abortions, etc. (all gestational ages,

only for the Neural tube defect and Trisomy cases requested)

Age: Below 24 months of age

Residence: All in state births; Out of state births hospitalized in state up

to 24 months of age with reportable birth defect




file



Delivery hospitals: Discharge summaries, Medical records abstracts

codes from charts

Pediatric & tertiary care hospitals: Discharge summaries


Case Ascertainment





certificate with a birth defect box checked, All neonatal deaths, Chart

review done by the coders in Health Information Management



Coding: ICD-9-CM, ICD-10 for death certificate

Data Collected











(hospitals, etc.)


Data Analysis



Comparison/verification between multiple data sources, Timeliness



variables, Needs assessment, Service delivery, Referral, Grant proposals,

Education/public awareness, Prevention projects

System Integration


System integration: Virginia birth defects registry data (VaCARES) are

reported by hospitals to the state health department via the Virginia Infant

Screening and Infant Tracking System (VISITS II), which is a Web-based

integrated data tracking and management system. VISITS II is a

component of the Virginia Vital Events and Screening Tracking System

(VVESTS), which also includes the Virginia electronic birth certificate

and Virginia Early Hearing Detection and Intervention Program

databases.

Funding


Other

Web site: http://www.vahealth.org/gns/vaCares.htm

Surveillance reports on file: Virginia Congenital Anomalies Reporting

and Education System: Birth Defect Surveillance Data 1989-1998

available on Web site.

Additional information on file: Family Brochure and Parent Fact Sheets

(English and Spanish) available on Web site.

Contacts

Kathleen Moline, BSN, MA

Division of Child and Family Health, Office of Family Health

Services, Virginia Department of Health

109 Governor Street, 8th Floor

Richmond, VA, 23219

Phone: 804-864-7712 Fax: 804-864-7721


Joanne Boise

Division of Child and Family Health, Virginia Department of Health

109 Governor Street, 8th Floor

Richmond, VA, 23219

Phone: 804-864-7688 Fax: 804-864-7721




Washington

Washington State Birth Defects Surveillance System (BDSS)

Purpose: Surveillance, Referral to Services

Partner: Universities, Hospitals, Environmental Agencies/Organizations


Start year: 1986- Active and 1991- Passive


Organizational location: Department of Health (Office of Healthy

Communities, Surveillance & Evaluation)


Statewide: Yes

Current legislation or rule: Notifiable Conditions: WAC 246-101


Case Definition

Outcomes covered: From 1987 to 1991 (active surveillance), and from

1991 to the 2000 (passive surveillance), the cases reportable to the Birth

Defects Registry included those with ICD-9-CM codes 740-759, selected

primary cancers, selected metabolic conditions, and FAS/FAE. Since the

adoption of the Notifiable Conditions law in 2000, conditions subject to

mandatory reporting are neural tube defects, orofacial clefts, limb

deficiencies, abdominal wall defects, hypospadias/epispadias and Down

Syndrome. FAS/FAE, Cerebral Palsy and Autism are designated as

reportable with systems being established to ascertain cases outside the

hospital setting.



and greater)

Age: We ascertain cases through 1 year of age for structural defects and

to age ten for FAS/FAE, Cerebral Palsy and Autism.

Residence: Resident births; children born, diagnosed or treated in-state





Delivery hospitals: Disease index or discharge index

Pediatric & tertiary care hospitals: Disease index or discharge index

Other sources: University-based FAS/FAE and Autism specialty centers

Case Ascertainment

Coding: ICD-9-CM, ICD-9-CM, FAS/FAE coding scheme will be

utilized in data collection and case description for FAS/FAE cases

Data Collected


etc.), Demographic information (race/ethnicity, sex, etc.), Tests and

procedures, Birth defect diagnostic information

Mother: Identification information (name, address, date-of-birth, etc.)





(hospitals, etc.), Casefinding Log listing of all data elements required for

each case are completed by Medical Records staff, sometimes in

conjunction with hospital Information Systems staff. Several facilities

submit print-outs from data query of internal system of discharge data.

Minimal use of diskette or other forms of electronic data transfer. A web-

based reporting system is currently in development.

Database storage/management: Web-based SQL server

Data Analysis

Data analysis software: SAS, Stata




Monitoring outbreaks and cluster investigation, Time trends, Observed

vs. expected analyses, Education/public awareness

System Integration

System links: Link case finding data to final birth file, CSHCN program

participant file

Funding


Contacts

Kevin Mark Beck, MA

Washington Dept. of Health; Office of Healthy Communities,

Surveillance & Evaluation

P.O. Box 47835

Olympia, WA, 98504-7835

Phone: 360-236-3492 Fax: 360-236-2323


Katie Hutchinson, PhD, MSPH

Washington Dept. of Health; Office of Healthy Communities,

Surveillance & Evaluation

P.O. Box 47835

Olympia, WA

Phone: 360-236-3546 Fax: 360-236-2323




West Virginia

West Virginia Birth Defects Surveillance System Congenital Abnormalities Registry, Education and Surveillance System (CARESS)




Advocacy Groups


Start year: 1989



(Epidemiology/Environment), Department of Health (Vital Statistics),

Department of Health (Maternal and Child Health)


Statewide: Yes

Current legislation or rule: State Statute Section 16-5-12a

Legislation year enacted: 1991Legislation updated: 2002

Case Definition

Outcomes covered: Congenital anomalies of ICD-9 codes 740-759, 760,

764, 765, 766



and greater), Elective Terminations (20 weeks gestation and greater)

Age: 0-6 years



Case ascertainment: Passive case ascertainment, monthly reports sent

from birthing facilities across the state and reproductive outcome forms

submitted by facilities and individual physicians


file, Fetal death certificates, Elective termination certificates



program, Development Disabilities Surveillance, Cancer registry,

AIDS/HIV registry, SIDS/SUID



ICU/NICU logs or charts, Pediatric logs


Discharge summaries, ICU/NICU logs or charts, Pediatric logs, Specialty

outpatient clinics, physicians complete reproductive outcomes forms for

those diagnosed after delivery


Other sources: Physician reports, pediatric referrals of children diagnosed

after delivery and discharge

Case Ascertainment





congenital heart disease), Any birth certificate with a birth defect box

checked, Infants with low birth weight or low gestation (less than 2500

grams or less than 37 weeks), All stillborn infants, All neonatal deaths,

All elective abortions, All infants with low APGAR scores, All infants in

NICU or special care nursery



CNS condition (e.g., seizure), GI condition (e.g., recurrent blockage), GU

condition (e.g., recurrent infections), Cardiovascular condition, All infant

deaths (excluding prematurity), Childhood deaths between 1 and 6,


codable defect

Coding: ICD-9-CM, ICD-10-CM

Data Collected



measurements (weight, gestation, Apgars, etc.), Infant complications,








Family history




(hospitals, etc.)


Data Analysis

Data analysis software: Access


multiple data sources, Timeliness


Rates by demographic and other variables, Time trends, Epidemiologic



projects

System Integration


data to final birth file, Plans continue to link several programs housed in

the Office of Maternal, Child and Family Health.

Funding

Funding Source: Title V Block Grant funds

Other

Web site: http://www.wvdhhr.org/caress/

Contacts

Kathryn G. Cummons, MSW

Research, Evaluation and Planning

350 Capitol St.

Charleston, WV, 25301

Phone: 304-558-5388 Fax: 304-558-3510


Melissa A. Baker, MA

OMCFH

350 Capitol St.

Charleston, WV, 25301

Phone: 304-356-4438 Fax: 304-558-3510




Wisconsin

Wisconsin Birth Defects Registry (WBDR)




Programs, Advocacy Groups


Start year: 2004



Health)

Population covered annually: ~69,000

Statewide: Yes

Current legislation or rule: Wisconsin Statutes 253.12

Rules: HFS 116--Took effect April 1, 2003


Case Definition

Outcomes covered: Structural malformations, deformations, disruptions,

or dysplasias; genetic, inherited, or biochemical diseases.

Pregnancy outcome: Live Births (20 weeks gestational age or greater),


and greater)


Residence: Statute mandates reporting of birth defects diagnosed or

treated in Wisconsin regardless of residence status



Delivery hospitals: Case reports from nursery managers

Pediatric & tertiary care hospitals: case reports from pediatric specialty

clinics


Third party payers: Health maintenance organization (HMOs)



Case Ascertainment

Coding: Wisconsin codes assigned to a specific list of birth defects

crosswalked to ICD-9-CM where possible

Data Collected




information









(hospitals, etc.), Organizations can report by uploading multiple records

from their electronic patient records system to the WBDR secure website.


Data Analysis






cluster investigation, Time trends, Observed vs. expected analyses,




Prevention projects

System Integration

System links: Legislation currently prohibits data linkage.

Funding

Funding Source: MCH Block grant - staffing and Birth

Record/Certificate fees - Registry/Program

Other

Web site: https://phin.wisconsin.gov/wbdr/index.html


http://www.dhs.wisconsin.gov/health/children/birthdefects/index.htm

Comments: We have stopped printing reports as of 2008 and instead post

them to our website.

Contacts

Elizabeth Oftedahl, MPH

Division of Public Health, Department of Health and Family Services

1 West Wilson, PO Box 2659

Madison, WI, 53701

Phone: 608-261-9304 Fax: 608-267-3824


Peggy Helm-Quest, MSEd, MHA, CHES

Division of Public Health, Department of Health and Family Services

1 West Wilson, PO Box 2659

Madison, WI, 53701

Phone: 608-267-2945 Fax: 608-267-382


Wyoming


Wyoming plans to have birth defects surveillance data in 2012.

Contacts

Amy Spieker, MPH

Wyoming Department of Health

6101 Yellowstone Rd, Ste 420

Cheyenne, WY, 82002

Phone: 307-777-5769 Fax: 307-777-8687


Ashley Busacker, PhD

CDC/WDH

6101 Yellowstone Rd, Ste 510

Cheyenne, WY, 82002

Phone: 307-777-6936




US Department of Defense

United States Department of Defense (DoD) Birth and Infant Health Registry


Partner: Universities, Hospitals, Other DoD Programs


Start year: 1998


Organizational location: Deployment Health Research Department,

Naval Health Research Center, San Diego, CA

Population covered annually: Approximately 100,000 per year

Statewide: No, National/Worldwide; includes all DoD beneficiaries

Current legislation or rule: Assistant Secretary of Defense, Health

Affairs Policy Memorandum


Case Definition

Outcomes covered: Outcomes include those birth defects listed in the

case definition of the National Birth Defects Prevention Network. For a

birth defect to be represented, the diagnosis must appear at least once in

an inpatient record, or at least twice on two separate dates for outpatient

encounters. Same sex multiples are excluded from analysis.


Age: Birth to 1 year

Residence: Worldwide; any birth to a US military beneficiary.



ascertainment, Population based, electronic diagnostic codes from all

inpatient and outpatient healthcare encounters of US military

beneficiaries.


summaries, Specialty outpatient clinics, all inpatient and outpatient

encounters are captured in standardized DoD data.


Discharge summaries, Specialty outpatient clinics, all inpatient and

outpatient encounters are captured in standardized DoD data.

Third party payers: All inpatient and outpatient encounters are captured

in standardized DoD data.

Other sources: Validation of standardized electronic data performed by

active case ascertainment and chart review of a random sample of births

from military facilities.

Case Ascertainment



codes outside 740-759, validation of standardized electronic data

performed by active case ascertainment and chart review of a random

sample of births from military healthcare facilities.



Coding: ICD-9-CM

Data Collected







Prenatal care, Prenatal diagnostic information, Pregnancy/delivery

complications


Demographic information (race/ethnicity, sex, etc.), Illnesses/conditions



(hospitals, etc.)

Database storage/management: Access, SAS

Data Analysis






Rates by demographic and other variables, Time trends, Observed vs.


Identification of potential cases for other epidemiologic studies, Grant

proposals, Prevention projects

System Integration

System links: DoD databases

System integration: DoD databases

Funding

Funding Source: 100% Other federal funding (non-CDC grants)

Other

Web site: http://www.med.navy.mil/sites/nhrc/Pages/Department164.aspx

Surveillance reports on file: DoD/Health Affairs policy memorandum;

annual reports

Contacts

Ava Marie S. Conlin, DO, MPH

Deployment Health Research Department, Dept 164, Naval Health

Research Center

140 Sylvester Road

San Diego, CA, 92106-3521

Phone: 619-767-4489 Fax: 619-767-4806


Gia R. Gumbs, MPH

DoD Birth and Infant Health Registry

140 Sylvester Road

San Diego, CA, 92106-3521

Phone: 619-553-9255 Fax: 619-767-4806




Major Birth Defects Data from Population-based Birth Defects … · 2012. 12. 22. · Birth Defects...

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