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Maternal & Child Health

Advisory Committee on Heritable Disorders in Newborns and Children
 

Seventh Meeting
February 13-14, 2006
Ronald Reagan Building and International Trade Center
Washington, DC

Agenda

Monday, February 13, 2006
8:30 a.m. – 9:00 a.m. Continental Breakfast (for Committee and Ex-Officio Members)
9:00 a.m. – 9:15 a.m.

HHS Welcome and Introduction

Elizabeth M. Duke, Ph.D., Administrator
Health Resources and Services Administration
9:15 a.m. – 9:30 a.m.

Opening Remarks and Welcome

R. Rodney Howell, M.D.
Committee Chair

Introduction of New Committee Members

James A. Newton, M.D.
Mary Jane Owen, M.S.W.

Introduction of New Organization Representatives

Association of State and Territorial Health Officials
Christopher A. Kus, MD, MPH

Food and Drug Administration
Ethan Hausman, M.D.

Child Neurology Society
Bennett Lavenstein, M.D.
9:30 a.m. – 10:45 a.m.

Subcommittee Reports

Update on work.  Presentation to include established scope of work and activity elements subcommittee is considering, with projected timelines for completion (20 minutes per subcommittee with 15 minutes of Committee discussion)
10:45 a.m. – 11:00 a.m.

Break
11:00 a.m. – 12:00 p.m.

National Coordination Center for the Regional Genetics and Newborn Screening Collaboratives

Michael S. Watson, PhD, FACMG
Executive Director
American College of Medical Genetics

12:00 p.m. – 1:00 p.m.

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

Regional Genetic Service and Newborn Screening Collaboratives

  • Epidemiology: Mapping Genetic Needs Relative to Services for Cystic Fibrosis, Hemoglobinopathies and Metabolic Disorders

    • Anne Marie Comeau, PhD
    New England Regional Collaborative

  • Performance Metrics and Harmonization of Cut-Off Values for Newborn Screening by Tandem Mass Spectrometry

    • Piero Rinaldo, M.D., Ph.D.
    Great Lakes Region 4

  • Preparing for Disasters: Genetic/Metabolic Health Care Delivery During and after Hurricanes Katrina and Rita

    Jess Thoene, M.D.
    Southeast Regional Genetics Group
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. – 3:00 p.m.

NIH Office of Rare Diseases – Rare Disease Centers of Excellence

Stephen Groft, PharmD
Director
Office of Rare Diseases

 
3:00 p.m. – 3:15 p.m. Break
3:15 p.m. – 5:00 p.m. Subcommittee Meetings
5:00 p.m. Adjourn
Tuesday, February 14, 2006
8:00 a.m. – 8:30 a.m. Continental Breakfast (for Committee and Ex-Officio Members)
8:30 a.m. – 10:00 a.m.

Nomination Process for Candidate Conditions on the Uniform Screening Panel 

Nancy Green, M.D.
Medical Director
March of Dimes

  • Criteria Work Group Report 
    1. Criteria for Nomination Form
    2. Criteria for Health Services Resources Administration
    3. Criteria for the evaluation of the condition by evidence-based workgroup(s)

    Piero Rinaldo, M.D., Ph.D.

  • Framework for the Overall Nomination Process

    Details of the Evidence–based Review Group(s)
    A Trial Run of Conditions Using the Proposed Process

10:00 a.m. – 10:45 a.m.

Subcommittee Reports and Discussion
10:45 a.m. – 11:00 a.m.

Lysosomal Storage Diseases Workshop

Robert Vogt, Ph.D.
Centers for Disease Control and Prevention

 
11:00 a.m. – 11:15 a.m.

Break
11:15 a.m. – 11:45 a.m.

Organizations Representing Policy makers and Legislation

  • National Conference of State Legislators
    Alissa Johnson, M.A.
  • Association of State and Territorial Health Officials
    Christopher A. Kus, M.D., M.P.H.
11:45 a.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

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