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

February 26-27, 2009: Update On American Health Information Community's Newborn Screening Use Case

Agenda (PDF - 139KB)

Minutes (PDF - 921KB)

Transcript (PDF - 937KB)

Presentations

Update On American Health Information Community's Newborn Screening Use Case (PDF - 971KB)
Alan E. Zuckerman, M.D.

Decision Criteria And Process Workgroup (PDF - 2483KB)
Ned Calonge, M.D., M.P.H.

Evidence Review Workgroup: Final Draft Report On The Candidate Nomination Of Servere Combined Immundoficiency (SCID) (PDF - 251KB)
Ellen Lipstein, M.D.

Committee Discussion And Decision On The Nomination Of SCID To The Recommended Uniform Screening Panel (PDF - 1027KB)
Gerard Vockley, M.D., Ph.D. (discussant)

National Institutes Of Health Report: Newborn Screening Translational Research Network Coordination Center (PDF - 1251KB)
Duane Alexander, M.D.

Update On HRSA And CDC Long Term Follow-up Projects: Intersecting The Translational Research Network

Update: Long Term Follow up of Newborn Screening Conditions in New England (PDF - 6999KB)
Anne Marie Comeau, Ph.D.

California Newborn Screening Program: Long Term Follow-up Data Systems for Metabolic Disorders (PDF - 155KB)
Lisa Feuchtbaum, Dr.P.H, M.P.H.

Monitoring And Measuring What Counts: Developing A Longitudinal, Sustainable Program To Monitor Occurance and Outcomes of Inherited Metabolic Conditions (PDF - 450KB)
Nicola Longo, M.D., Ph.D.

The NIC/NICHD Funded Newborn Screening Translational Research Network: A Project to Develop Infrastructure to Facilitate Research and Clinical Investigation to Improve Newborn Screening (PDF - 134KB)
Michael Watson, Ph.D. 

Translational Research Policies: Introduction To Institutional Review Boards, Informed Decision-Making And Consent

Regulation and Oversight of Research with Children (PDF - 547KB)
Jeffrey R. Botkin, M.D., M.P.H. - Moderator

Translational Research Policies: Introduction to IRBs, Informed Decision-Making, and Consent (PDF - 2939KB)
Edward Bartlett, Ph.D.

Translational Research in the Context of Newborn Screening—How Can We Make it Work? (PDF - 810KB)
Alan Fleischman, M.D. 

Residual Blood Spots: Policies And Uses

Storage, Retention, and Use of Residual Dried Blood Spots (PDF - 5081KB)
William Hannon, Ph.D.

Ethical and Regulatory Considerations in Research using Residual Specimens(PDF - 3174KB)
Jeffrey R. Botkin, M.D., M.P.H.

Subcommittee Reports

Subcommittee on Laboratory Standards and Procedures (PDF - 96KB)
Gerard Vockley, M.D., Ph.D.

Subcommittee on Education and Training (PDF - 560KB)
Tracy L. Trotter, M.D., F.A.A.P.

Subcommittee on Follow-up and Treatment (PDF - 192KB)
Coleen Boyle, Ph.D., M.S.

Persons using assistive technology may not be able to fully access information in these files. For assistance, contact comments@hrsa.gov or 888-275-4772 (TTY: 877-489-4772).