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Maternal & Child Health

Advisory Committee on Heritable Disorders in Newborns and Children
 

Fifth Meeting
July 21-22, 2005
Ronald Reagan Building and International Trade Center
Washington, DC

Agenda
Thursday, July 21, 2005
8:30 a.m. – 9:00 a.m. Continental Breakfast (for Committee and Ex-Officio Members)
9:00 a.m. – 9:15 a.m.

Opening Remarks and Welcome

Betty James Duke, Ph.D., Administrator
Health Resources and Services Administration
Department of Health and Human Services
9:15 a.m. – 9:30 a.m.

Committee Business

  • Approval of Minutes
  • Approval of Subcommittees’ Charge

R. Rodney Howell, M.D.
Committee Chair
9:30 a.m. – 9:40 a.m.

American College of Medical Genetics (ACMG) Report—Update

Peter C. van Dyck, M.D., M.P.H.
Associate Administrator
Maternal and Child Health Bureau
9:40 a.m. – 10:15 a.m.

Committee Discussion on Public Comments to ACMG Report

R. Rodney Howell, M.D.
Committee Chair
10:15 a.m. – 10:30 a.m.

Break
10:30 a.m. – 11:45 a.m.

Committee Discussion on Public Comments to ACMG Report, continued

R. Rodney Howell, M.D.
Committee Chair
11:45 a.m. – 12:00 p.m.

State of the States
Bradford Therrell, Ph.D.
National Newborn Screening and Genetic Resource Center
12:00 p.m. – 1:00 p.m.

Working Lunch (for Committee and Ex-Officio Members)
1:00 p.m. –
2:30 p.m.

The Role of Evidence and Other Factors in Decision – Making

  • Evidence, Politics, Technological Change
    Annetine Gelijns, Ph.D. and Alan Moskowitz, M.D.
    Columbia University
  • Making Policy When Evidence is Meager and in Dispute
    David Atkins, M.D.
    Agency for Health Research and Quality
    Chief Medical Officer
    Director, Center for Outcomes and Evidence
  • Incorporating Evidence-Based Expert Opinion into the Decision – Making Process
    John McCormick , M.D.
    Food and Drug Administration
    Deputy Director, Office of Orphan Products Development
2:30 p.m. – 2:45 p.m. Break
2:45 p.m. – 5:00 p.m. Committee Discussion on Decision – Making Process
5:00 p.m. Adjourn
Friday, July 22, 2005
8:00 a.m. – 8:30 a.m. Continental Breakfast (for Committee and Ex-Officio Members)
8:30 a.m. – 9:00 a.m.

American College of Obstetrics and Gynecology (ACOG)—Newborn Screening Policy

Anthony Gregg, M.D.
American College of Obstetrics and Gynecology
Committee on Genetics
9:00 a.m. – 11:00 a.m. Committee Business – Subcommittee Meetings
11:00 a.m. – 11:15 a.m. Break
11:15 a.m. – 12:00 p.m.

Committee Business – Subcommittee Reports

  • Education and Training
    Stephen Edwards, M.D.
    Past-President
    American Academy of Pediatrics
  • Follow Up
    Coleen Boyle, Ph.D., M.S.
    Center for Disease Control and Prevention
  • Laboratory Standards and Procedures
    Amy Brower, Ph.D.
    Executive Director
    Third Wave Technologies
    Medical Informatics and Genetics
12:00 p.m. – 1:00 p.m. Working Lunch (for Committee and Ex-Officio Members)
1:00 p.m. – 2:00 p.m.

Public Comments

2:00 p.m. – 3:00 p.m.

Committee Business – Discussion

R. Rodney Howell, M.D.
Committee Chair
3:00 p.m. Adjourn