NNFM  Nordic  Network  -­‐  Fetal  Medicine  

April  14  -­‐  2015  Gothenburg  Invasive  Fetal  Medicine  

   A  workshop  on  Nordic  collabora7on  in  invasive  fetal  

medicine  –  supported  by  Nordic  Council      

Challanges  within  invasive  fetal  medicine  and  fetal  therapy  !  Rare  condiEons  -­‐  how  to  gain  rouEne  Low  cases  load  –  paHern  recogniEon  may  fail  Training  on  paEents  can  be  fatal  for  the  fetus  Decreasing  numbers  of  CVS  aMer  NIPT  Cut  down’s  by  hospital  owners  !  

AIM  of  today  !  

To  create  collabora7on  across  our  Nordic  borders  hopefully  resul7ng  –  along  the  way  -­‐  in  improvements  for  our  pregnant  women  and  

pa7ents  by  establishing  networks  for  educa7on  and  competence  development  for  doctors  working  within  invasive  fetal  medicine.  

 

The  funding  by  Nordic  Council  ApplicaEon:    Send  January  2014,  concerning  the  establishment  of  a  Nordic  collaboraEon  within  competence  development  in  the  invasive  part  of  the  fetal  medicine    -­‐  NO  responce  !  

   200.000,-­‐D.kr.  oktober  2014  –  very  suddenly      More  funding  will  depend  on:    Establishings  las7ng  agreements  between  our  Nordic    departments    

The  funding  by  Nordic  Council  200.000,-­‐  D.  Kr.  for    this  meeEng    to  cover:    

   accomodaEon      transports      foods  and  meeEng  faciliEes      ect.        

43  parEcipants    today    19  applied  for  funding    

 KS  responsible  for  accounEng  in    details    can  be  transported  to  next  year/  or  returned  

 NC  has  encouraged  us  to  apply  for  a  next  meeEng/conference  in  2016  .      More  funding  will  depend  on:    Establishings  las7ng  agreements  between  our  Nordic    departments        

VIP  message  

All  details  for  reimbursement  through  Karin  –  must  be  filled  out  TODAY  –  and  all  reciepts  possible  passed  on  to  Karin  !!    Karin  will  pay  the  hotel  directly  at  check  out  Thursday    -­‐  before  for  those  who  need  it.  

Tuesday April 14th A workshop on Nordic collaboration in invasive fetal medicine – supported by Nordic Council Moderators: Karin Sundberg – Rigshospitalet Copenhagen

Peter Lindgren – Karolinska Stockholm 11.00-11.15 am - Welcome to NNFM by Bo Jacobsson, Sahlgrenska Gothenburg. – Introduction: Karin Sundberg (DK) and Peter Lindgren (SE). 11.15-11.35 am – Invasive Fetal Medicine – organisation Denmark, Karin Sundberg. 11.35-12.10 am – Invasive Fetal Medicine – organisation Sweden, Peter Lindgren. 12.10-12.30 pm – Invasive Fetal Medicine – organisation Norway, Torbjørn Eggebø. 12.30-13.30 pm Lunch 13.30 – 13.50 pm – Invasive Fetal Medicine – organisation Finland, Aydin Tekay. 13.50 – 14.05 pm – Invasive Fetal Medicine – organisation Iceland, Hildur Hardardottir. 14.05 – 14.15 pm – Overview Nordic countries – Olav Bjørn Petersen – Århus-DK. 14.15 – 14.45 pm Fetal aortic valvuloplasty, Mats Mellander (SE) 14.45 – 15.45 pm Coffee/cake in smaller work shop groups of mixed nationalities

Brainstorm concerning future potential collaboration fields, including competence development of Nordic doctors in invasive fetal medicine. 15.45 – 16.00 pm Break 16.00 – 16.45 pm Reporting by the groups and discussion of proposed ideas and eventual constitution of a stearing group on invasive competence development under NNFM. 16.45 – 17.00 pm Conclusions, Karin Sundberg (DK) and Peter Lindgren (SE) 19.00 pm Dinner at the Clarion Hotel Post

8  

DENMARK

Invasive Fetal Medicin – Organisation

by Karin Sundberg Fetal Medicine Dept. Rigshospitalet - Copenhagen  

Denmark  -­‐  demographics  •  5,6  mill  inhabitants    •  Public  health  care  system    •  55-­‐60.000  deliveries/year    •  21  obstetric  departments    •  ”All”  deliveries  take  place  in  public  hospitals    •  99%  of  the  prenatal  care  in  public  hospitals  

•  >  95%  aHend  1.  trimester  T  21  screening  Føtodatabasen  –  Astraia  DFMS  –  Dansk  Føtalmedicinsk    Selskab  

9  

10  

Danish  naEonal  guideline  2004    

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10

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30

40

50

60

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90

100

0 1 2 3 4 5 6

Det

ectio

n ra

te (%

)

False-positive rate (%)

Random Maternal age Triple test PAPP-A + β-hCG NT NT and PAPP-A+ β-hCG

•  Postnatal  versus  prenatal  T21  diagnosis  

Danish  T21    

Dansk  CytogeneEsk  Centralregister  

0  20  40  60  80  100  120  140  160  180  

numbe

r  

year  

postnatal  

prenatal  

12  

Postnatally  diagnosed  with  T21  

Danish  CytogeneEc  Register    

0  

10  

20  

30  

40  

50  

60  

70  

numbe

r  

year  

postnatal  

2013  births  not    completed  

Yearly  number  of  invasive  test  (AC  +  CVS)  

13  

Invasive  tests  -­‐  significantly  decreased  

Danish  CytogeneEc  Register  

0  

1000  

2000  

3000  

4000  

5000  

6000  

7000  

8000  

2000  2001  2002  2003  2004  2005  2006  2007  2008  2009  2010  2011  2012  2013  

numbe

r  

year  

14  

Change  in  type  of  invasive  tests  

0  

500  

1000  

1500  

2000  

2500  

3000  

3500  

4000  

4500  

2000   2001   2002   2003   2004   2005   2006   2007   2008   2009   2010   2011   2012   2013  

Num

ber  

Year  

AC  

CVS  

Danish  CytogeneEc  Register  

CVS  –  Amniocentesis  in  Denmark  

Undertaken  at  16  departments  in  Denmark  –  some  do  less  than  100/year  !!!  

Greenland  and  Faroe  Islands  only  do  Amniocentesis.    

BIG  PROBLEM  for  educaEon  and    competence  maintainance  !!  

 Quality  sEll  good  –  all  use  same  TA  technique  and  

needleguide  –  very  low  naEonal  spontaneous  aborEon  rate  

Future  quality  ?        

Centralised  invasive  procedures  in  Denmark  to  Rigshospitalet  

 Intrauterine  blood  transfusions  –  all          (15  to  34  weeks)      Intrauterine  therapeu7c  drains  

   thorax  –  ”bladder”      Treatment  of  TTTS  –    by  laser  or  cord  occlusion        (16-­‐24  weeks)      Complicated  monochorionic  cases  twin/triplets  op7ng  for  selec7ve  fe7cide  by  cord  occlusion  /  radiofrequency  abla7on  (resent).    

           

DENMARK  –  Rigshospitalet  -­‐  CPH  NaEonal  Center  for  Fetal  Therapy  

Invasive  procedures  

CVS/AC  

Invasive  procedures  at  the  4  larger  university  hospitals  in  Denmark    

Fetal  reduc7ons  -­‐1.  trimester  Selec7ve  fe7cides  -­‐  discrepancy  

 

Centralised  invasive  procedures  in  Denmark  to  Rigshospitalet  

Our  invasive  team  is  presently:        

 Lisa  Neerup  Jensen,  Kirsten  Søgaard  and  Karin  Sundberg        Can  be  contacted  on  0045  35  45  08  77  

 We  receive  paEents  from  all  other  Nordic  Countries  –  referred  from  public  hospitals  second  opinion  or  for  invasive  treatment  .    A  tradiEon  started  by  Connie  Jørgensen  –  Head  of  Department  unEl  2012  –  leO  us  for  Malmoe-­‐    is  now  head  of  Emma  Klinikken  !    

 

Danish  organisa7on  –  legal  termina7ons  !  

Free  aborEon  unEl  12+0  week  for  persons  on  Danish  ground      gestaEonal  age  determinated  by  CRL  or  LMP        

AMer  12+0  weeks  up  to  22+0  weeks    The  regional  aborEon  council  is  applied  by  the  MD  in  charge  !      Five  regionale  councils  cover  the  country        Level  of  severity  evaluated  –  consistency!!!  

     Each  aborEon  council  has  3  members:          A  MD  in  OB/GYN,            A  person  from  the  social  authoriEes            A  psyciatrist    In  simple  cases  usually  by  phone  -­‐  answer  within  24  hours  

   If    terminaEon  is  denied  –  the  paEent  can  appeal  to  the  superior    NaEonal  aborEon  appeal  council  of  3  persons  too      regulated  by  The  NaEonal  Health  Authority  -­‐  SST.  

 ExcepEons  –  only  for  lethal  condiEons  or  severe  maternal  health  issues.