Call in number: 1-866-671-5988Call in number: 1-866-671-5988

Conference code: 841-900-2082Conference code: 841-900-2082

NBSTRN SCID National Call

January 27, 2012

NBSTRN SCID National Call

January 27, 2012

AgendaAgenda

Standing Agenda – Led by Dr. Michele Caggana Introduction of New Participants Update from States

• Update from States that are Currently Screening

• Update from States that are not Currently Screening Update on R4S Portal – Roshini and Fred Update from CDC

• NSQAP TREC PT Program – Joanne

• NSTRI - Bob Update on Educational Efforts Implementation Issues Long-Term Follow-Up Data Sets - Amy

Newborn Screening Translational Research Network 2

December 2011 UpdateDecember 2011 Update

Newborn Screening Translational Research Network 3

Number of

States

Shading

Status

9 State-wide Screening

3 Partial Screening

16 Screening approved

23 Fact Finding

Percentage of Annual BirthsPercentage of Annual Births

Newborn Screening Translational Research Network 4

December 2011 Update From StatesDecember 2011 Update From States

States Currently ScreeningStates Currently Screening States Not Currently ScreeningStates Not Currently Screening

• IA – Advisory meeting in January

• WA – Advisory meeting in January. Cost benefit data would be helpful. Discussed Chan et al 2011 article. Will distribute via email to group.

• TX – Whitepaper drafted and includes cost benefit data. Rachel will check if she can get approval to share it broadly. TX has reagents on hand to continue to screen until mid-February 2012.

• KS – No change.

• MO – Fee increase needed. Targeting later half of 2013.

• NE – Meetings with insurance companies underway. Six months before official and estimate screening sometime in 2012.

IndustryIndustry

Newborn Screening Translational Research Network 5

December R4S UpdateDecember R4S Update

Newborn Screening Translational Research Network 6

• SCID module available. Roshini Abraham and Fred Lorey are the co-curators.

• Contact David McHugh to access - McHugh.David@mayo.edu

• Goal is to get states that are screening and/or planning to screen to actively enter data. Pilot data can be entered into R4S.

• Introductory webinar can be held at any time.

• Currently 6 condition types• Depends on diagnosis given by

immunologist

Condition TypesConditions by

Flow Phenotyping

SCID T-B+NK-

Leaky SCID/Omenn Syndrome

T-B-NK-

Variant SCID T-B-NK+

Syndromes with T cell impairment

T-B+NK+

Secondary T cell lymphopenia other than preterm alone

Other

Preterm alone

December 2011 CDC Update - BobDecember 2011 CDC Update - Bob

Development of CLSI Guidance in process.

Development of a calibrator in process.

Newborn Screening Translational Research Network 7

December CDC Update - JoAnneDecember CDC Update - JoAnne

Formal proficiency program in place.• 7 laboratories enrolled.• Quarterly proficiency testing.• Currently recording first TREC report.• Available throughout the US in 2012.• Plan to introduce internationally in 2013.

Newborn Screening Translational Research Network 8

December Implementation IssuesDecember Implementation Issues

Cost effectiveness Chen et al 2011 article CDC effort – request update from Drs. Cuthburt and

Grosse

Screening and short-term follow-up algorithms It would be helpful to have a central location for sharing

algorithms – NBSTRN will post available algorithms

Educational Efforts It would be helpful to post available educational

materials – NBSTRN will post available algorithms

Newborn Screening Translational Research Network 9

January Implementation IssuesJanuary Implementation Issues

 Heather Smith - Can other’s on the call please explain to me how they charge their fee and what it covers? I’m trying to get a better understanding of how FL compares to some of the other states who are currently screening for SCID.  Is newborn screening a money maker for other states?

Newborn Screening Translational Research Network 10

Long-Term Follow-Up UpdateLong-Term Follow-Up Update

Common Data Elements defined by Joint Workgroup of NCC and NBSTRN

Disease Specific Elements in progress in conjunction with PIDTC

Review of USIDNET data sets Data capture tool development through NBSTRN and

subcontract with CHoP

Newborn Screening Translational Research Network 11

Action ItemsAction Items

Newborn Screening Translational Research Network 12

Responsible Party

Action Timeline

All Review and update status of implementation for your state

Before next call February

All Submit questions and/or agenda items

Before next call February