The javascript used on this site for creative design effects is not supported by your browser. Please note that this will not affect access to the content on this web site.
Skip Navigation
Department of Health and Human Services
Advisory Committee on Heritable Disorders in Newborns and Children
  • Print this
  • Email this

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)


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 or 888-275-4772 (TTY: 877-489-4772).