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Department of Health and Human Services
Advisory Committee on Heritable Disorders in Newborns and Children
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Twenty First Meeting of the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children

May 13-14, 2010: Report on Briefing paper from the Sickle Cell Disease  Carrier Screening Workgroup

Agenda (PDF - 30KB)

Minutes (PDF - 1882KB)

Transcript (PDF - 1887KB)


NICHD SCID Newborn Screening Trial (PDF - 325KB)
Alan E. Guttmacher, M.D.

Report on Briefing paper from the Sickle Cell Disease Carrier Screening Workgroup (PDF - 402KB)
Kwaku Ohene-Frempong, M.D.

Proposed Task Force on Carrier Screening (PDF -211KB)
Sara Copeland, M.D.

Health Information Technology Workgroup Report (HITWG) (PDF - 68KB)
Sharon Terry, M.A. and Alan Zuckerman, M.D.

Newborn Screening Translational Research Network and Long-term Follow-Up Datasets (PDF - 338KB)
Michael Watson, PhD

Report from the Newborn Screening Clearinghouse's Meeting - Information and Data Collection for Newborn Screening: A National Approach (PDF - 193KB)
Sharon Terry, M.A.

Survey of State Newborn Screening Program (PDF - 487KB)
Amy Brower, Ph.D.

Report on Second Screen Study (PDF - 527KB)
Jelili Ojodu, M.P.H.

Newborn Screening Contingency Plan (PDF - 134KB)
Allison Johnson, MPA

Subcommittee on Laboratory Standards and Procedures (PDF - 69KB)
Gerard Vockley, M.D., Ph.D.

Subcommittee on Education and Training (PDF - 265KB)
Jana Monaco and Tracy L. Trotter, M.D

Subcommittee on Follow-up and Treatment (PDF - 38KB)
Coleen Boyle, Ph.D., M.S.

Systematic [Evidence] Review Questions and AC Discussions (PDF - 211KB)
James M. Perrin, MD

Evidence Review Workgroup Report: Final Report on the Candidate Nomination Hemoglobin H (PDF - 160KB)
Alex Kemper, M.D., M.P.H., M.S.

Response to Council on Bioethics' Report on Newborn Screening (PDF - 169KB)
Tracy L. Trotter, M.D.

Lysosomal Storage Diseases-Report on State Screening Practices (PDF - 338KB)
Michael Watson, Ph.D.

Future Directions for the Evidence Review Workgroup (ERW) (PDF - 65KB)
Alex Kemper, M.D., M.P.H., M.S.

Evidence Review Workgroup Report: Literature Review for Critical Cyanotic Congenital Heart Disease (CCCHD) (PDF - 89KB)
Alex Kemper, M.D., M.P.H., M.S.

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