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Maternal & Child Health

Advisory Committee on Heritable Disorders in Newborns and Children
 

Fourth Meeting
April 21-22, 2005
Ronald Reagan Building and International Trade Center
Washington, DC

Agenda
Thursday, April 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

  • R. Rodney Howell, M.D., Committee Chair
9:15 a.m. – 10:30 a.m.

American College of Medical Genetics (ACMG) report to HRSA-Update

  • Peter C. van Dyck, M.D., M.P.H.
    Associate Administrator
    Maternal and Child Health Bureau

Committee Discussion

  • R. Rodney Howell, M.D.
    Committee Chair
10:30 a.m. – 10:45 a.m. Break
10:45 a.m. – 12:00 p.m.

Committee Discussion of ACMG report, Continued

  • R. Rodney Howell, M.D.
    Committee Chair
12:00 p.m. – 1:00 p.m. Working Lunch (for Committee and Ex-Officio Members)
1:00 p.m. – 2:00 p.m.

Pubilc Comment Period
2:00 p.m. – 2:45 p.m.

Subcommittee meetings
2:45 p.m. – 3:00 p.m.

Break
3:00 p.m. – 4:30 p.m.

Parental Education Session

Survey of States for Policies and Procedures for Public and Professional Education                   

  • Donna Williams
    National Newborn Screening and Genetic Resource Center

Parental Education Project

  • Terry Davis, Ph.D.
    Louisiana State University at Shreveport

Sickle Cell Disease Newborn Screening Education Project

  • Janet Ohene-Frempong, M.S.
    President, J. O. Frempong and Associates
4:30 p.m. – 5:00 p.m.

Committee Discussion

  • R. Rodney Howell, M.D.
    Committee Chair
 
5:00 p.m.

Adjourn

 
Friday, April 22, 2005
8:00 a.m. – 8:30 a.m. Continental Breakfast (for Committee and Ex-Officio Members)
8:30 a.m. – 9:30 a.m.

Guidelines for Newborn Screening Follow-up-Addressing the System Performance Evaluation and Assessment System

  • Bradford Therrell, Ph.D.
    National Newborn Screening and Genetic Resource Center

Newborn Screening Follow-up Activities and Its Quality Assurance

  • Robert Voigt, Ph.D.
    Centers for Disease Control and Prevention
  • Judith Tuerck, R.N., M.S.
    Assistant Professor
    Oregon Health and Science University
9:30 a.m. – 10:30 a.m.

Committee Business-Subcommittee Reports

Education and Training

  • Jennifer Howse, Ph.D.
    President
    March of Dimes Birth Defects Foundation

Follow Up

  • Coleen Boyle, Ph.D., M.S.
    Associate Director
    Center for Disease Control and Prevention
 
10:30 a.m. – 10:45 a.m. Break
10:45 a.m. – 11:15 a.m.

Committee Business-Subcommittee Reports, Continued

Laboratory Standards and Procedures

  • Amy Brower, Ph.D.
    Executive Director
    Third Wave Technologies
    Medical Informatics and Genetics
11:15 a.m. – 12:00 p.m.

Committee Discussion

  • R. Rodney Howell, M.D.
    Committee Chair
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.

Setting Committee Priorities

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