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Department of Health and Human Services
Discretionary Advisory Committee on Heritable Disorders in Newborns and Children

Twenty Third Meeting of the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children

January 27-28, 2011: Newborn Screening for Severe Combined Immunodeficiency (SCID): Overview of State Status

Agenda (PDF - 114KB)

Minutes (PDF - 591KB)

Audio Archives and Transcripts

Presentations

Update on NQF measures (PDF - 215 KB)
Sara Copeland, M.D.

Evidence Review Workgroup Report: Preliminary Report On the Candidate Nomination Hyperbilirubinemia (PDF - 2 MB)
James Perrin, M.D.

Newborn Screening for Severe Combined Immunodeficiency (SCID): Overview of State Status (PDF - 139 KB)
Jelili Ojodu, M.P.H. - Session Leader

SCID - Laboratory Update (PPT - 918 KB)
Carla Cuthbert PhD, FCCMG, FACMG

SCID - Follow-up and Treatment Update (PPT - 1.6 MB)
Christine Seroogy, MD

SCID - Parent Advocacy/ Educational Material Development (PPT - 3.8 MB)
Marcia Boyle, Immune Deficiency Foundation

NBSTRN Update (PPT - 792 KB)
Michael S. Watson, MS, PhD, FACMG

Efficacy of Newborn Screening from a Family Perspective: A National Survey of Recent and Prospective Mothers about Newborn Screening (PDF - 842 KB)
David Kaufman, PH.D.

Overarching Questions for Newborn Screening Long-term Follow-up (PDF - 119 KB)
Cynthia F. Hinton, PHD., M.S., M.P.H.
Subcommittee on Treatment and Follow-up

Financing and Status of Reimbursement for Genetic Services (PDF - 514 KB)
Kay Johnson, Johnson Group Consulting, Inc.

Report from the CCCHD Workgroup Meeting (PDF - 361 KB)
Rodney Howell, M.D.

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