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NBSTRN SCID National Call January 27, 2012. Call in number: 1-866-671-5988 Conference code: 841-900-2082. Agenda. Standing Agenda – Led by Dr. Michele Caggana Introduction of New Participants Update from States Update from States that are Currently Screening
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NBSTRN SCID National CallJanuary 27, 2012 Call in number: 1-866-671-5988 Conference code: 841-900-2082
Agenda • 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
December 2011 Update Newborn Screening Translational Research Network
Percentage of Annual Births Newborn Screening Translational Research Network
December 2011 Update From States • States Currently Screening • States 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. • Industry Newborn Screening Translational Research Network
December R4S Update • 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 Newborn Screening Translational Research Network
December 2011 CDC Update - Bob • Development of CLSI Guidance in process. • Development of a calibrator in process. Newborn Screening Translational Research Network
December 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
December 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
January 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
Long-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
Action Items Newborn Screening Translational Research Network