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NBSTRN SCID National Call November 18, 2011

NBSTRN SCID National Call November 18, 2011. 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 NYS Led Pilot CDC Funded Pilots – Minnesota and Michigan

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NBSTRN SCID National Call November 18, 2011

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  1. NBSTRN SCID National CallNovember 18, 2011 Call in number: 1-866-671-5988 Conference code: 841-900-2082

  2. Agenda • Standing Agenda– Led by Dr. Michele Caggana • Introduction of New Participants • Update from States • NYS Led Pilot • CDC Funded Pilots – Minnesota and Michigan • Update from States that are Currently Screening • Update from States that are not Currently Screening • Update on R4S Portal – Roshini • Update from CDC - Bob • Update on Educational Efforts – IDF, States, ACMG, Others • Abnormal Screen Brochure (IDF) • Implementation Issues • APHL Session on SCID • Long-Term Follow-Up - Amy Newborn Screening Translational Research Network

  3. October 2011 Update Newborn Screening Translational Research Network

  4. Percentage of Annual Births Newborn Screening Translational Research Network

  5. October 2011 Update From States • NYS Led Pilot – Pilot completed, report submitted. • States Currently Screening • NY - Meeting with insurance providers that went well. Reviewed some interesting recent cases where the TRECs were not zero. • CA – 537,721 to date. 100% sensitivity, 99.99% specificity, 28% PPV, 100% NPV, 1:25,606, False positive 0.01% • CO – Validation phase, November 2011 start. Colorado does NBS for WY but will not be doing SCID at this time. • MI – October 1st start date. 0.2% positive rate. Stratifying based on NICU status. • States Not Currently Screening • TX – Pilot phase, adding more hospitals. White paper submitted to the commissioner. • VA – Approved in October, working on STFU and LTFU. Screening and FU algorithm from states that are already screening would be helpful. • WA – Oct conference call with agency staff and advisory meeting in Dec. • MO – Planned for 2013. • KS – Advisory meeting in October. Screening depends on establishing a NBS fee. Current bill includes fee but not SCID. • IL – Pilot phase. Fee increase of $10 pending. • NE – Advisory committee review and plan complete for STFU and LTFU. New requirement from DHHS for NBS program to meet with major insurors. • FL – On agenda for Jan 2012 legislative agenda. • Industry • Perkin Elmer – FDA approved kit target is March 2013. Newborn Screening Translational Research Network

  6. October R4S Update • SCID module available. Roshini Abraham and Fred Lorey are the co-curators. • Contact David McHugh to access. • David M.S. McHugh | Biochemical Genetics Laboratory | IT Liaison - Research | 507-284-3063 | Fax: 507-266-2888 | 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. Newborn Screening Translational Research Network

  7. CDC Update - Bob • Dr. Robert Vogt updated the group on CDC efforts. • CLSI Document development in process. • Goal is to have a draft by the dend of 2011. • Focus on TRECs only. • Newborn Bloodspot Screening for Severe Combined Immunodeficiency (SCID) by Measurement of T-cell Receptor Excision Circles (TREC); Approved Guideline • Chairs • Harry Hannon, PhD Consultant • Chairholder • Roshini Sarah Abraham, PhD, D (ABMLI), Mayo Clinic • Vice-Chairholder • Lisa Kobrynski, MD, MPH Emory University School of Medicine • Committee Secretary Newborn Screening Translational Research Network

  8. CDC Update - JoAnn • Dr. Joanne Mei • Formal proficiency program in place. • 7 laboratories enrolled. • Quarterly proficiency testing. • Currently recording first TREC report. Newborn Screening Translational Research Network

  9. September Implementation Issues • Implementation Issues • Cost effectiveness information is lacking and would be helpful for states. • Algorithm sharing would be helpful. Newborn Screening Translational Research Network

  10. 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 • Data capture tool development through NBSTRN and subcontract with CHoP Newborn Screening Translational Research Network

  11. Action Items Newborn Screening Translational Research Network

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