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Maternal & Child Health

Advisory Committee on Heritable Disorders in Newborns and Children
 

Second Meeting
September 22-23, 2004
The Jurys Hotel
Washington, DC

Agenda
Wednesday, September 22, 2004
8:30 a.m. – 9:00 a.m. Continental Breakfast (for Committee Members and Speakers)
9:00 a.m. – 9:15 a.m.

HRSA Welcome

Dennis P. Williams, PhD, MA
Deputy Administrator
Health Resources and Services Administration
9:15 a.m. – 9:30 a.m.

Opening Remarks and Welcome

  • Approval of minutes
  • Introduction of members (not in attendance at last meeting)
    • James Collins, MD
    • Derek Robertson, JD
    • Denise Dougherty, PhD
    • R. Rodney Howell, M.D., Chair
      The University of Miami School of Medicine
9:30 a.m. – 11:00 a.m.

American College of Medical Genetics
“Newborn Screening: Toward a Uniform Screening Panel and System”

Michael Watson, Ph.D.
Executive Director
American College of Medical Genetics

  • Decision Analysis
    • Case Studies:
      • Lysosomal Storage Disease (no test but there is treatment)
      • Medium-chain acyl CoA dehydrogenase deficiency (test and treatment)
      • Cystic Fibrosis (test and treatment)
      • Cystic Fibrosis (score)
  • Recommended Screening Panel
11:00 a.m. – 11:15 a.m. Break
11:15 a.m. – 12:30 p.m. Discussion
12:30 p.m. – 1:30 p.m. Working Lunch (for Committee Members and Speakers)
1:30 p.m. – 2:30 p.m.

Use of MS-MS by State Newborn Screening Programs

  • State of the States
  • Barriers to incorporation of expanded screening with MS/MS

Bradford Therrell, Ph.D.
Director
National Newborn Screening and Genetics Resource Center
University of Texas Health Science Center at San Antonio
2:30 p.m. – 4:00 p.m.

Financing Newborn Screening Systems- I—How States Finance their Systems

  • State Financing Mechanisms Overview
    Kay Johnson, M.P.H., M.Ed.
    President
    Johnson Group Consulting Inc.
  • Panel-State Reports on Financing Mechanisms    
    • New York Report
      Kenneth Pass, PhD
      Director of Newborn Screening Program
      Department of Health
      New York State
    • Mississippi Report
      Daniel Bender, MHS
      Maternal and Child Health Director
      Mississippi Department of Health
4:00 p.m. – 5:00 p.m. Discussion
5:00 p.m. Adjourn
Thursday, September 23, 2004
8:00 a.m. – 8:30 a.m. Continental Breakfast (for CommitteeMembers and Speakers)
8:30 a.m. – 10:30 a.m.

Financing Newborn Screening Systems- II—The Benefit and Effectiveness of Screening

Panel
  • Office of Technology Assessment- 1986 Report on Newborn Screening Programs
    Judith L. Wagner, Ph.D.
    Scholar in Residence
    Institute of Medicine

    Julie Ostrowsky, B.Sc., M.Sc.
    Center for Infectious Disease Research and Policy and National Center for Food Protection and Defense
    University of Minnesota
  • Cost-Effectiveness Analysis of Newborn Screening
    Stephen Downs, M.D., M.S.
    Associate Professor and Director
    Children's Health Services Research
    Indiana University School of Medicine
  • Cost-Benefit Analysis of MS-MS in Newborn Screening in California
    George Cunningham, M.D., M.P.H.
    Chief, Genetic Disease Branch
    California Department of Health Services
10:30 a.m. – 10:45 p.m. Break
10:45 a.m. – 12:00 p.m. Discussion
12:00 p.m. – 1:00 p.m. Lunch (for Committee Members and Speakers)
1:00 p.m. – 2:00 p.m. Public Comments
2:00 p.m. – 3:30 p.m.

Committee Business 

Priority Issues

  • Recommendations
  • Subcommittees
  • Working Groups

Future Meetings Agenda
3:30 p.m. Adjourn