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Maternal & Child Health

Advisory Committee on Heritable Disorders in Newborns and Children

 

Eleventh Meeting
September 17-18, 2007
Ronald Reagan Building and International Trade Center
Washington, DC

Agenda

MONDAY, SEPTEMBER 17, 2007 
8:30 – 9 a.m. CONTINENTAL BREAKFAST (Committee Members and Representatives)

9 – 9:15 a.m.

Rotunda Room

OPENING REMARKS
R. Rodney Howell, M.D., Committee Chair

  • Approval of Minutes from May 2007 Meeting
  • Certificates of Appreciation for Departing Members
  • New Representatives:

    • American College of Medical Genetics  
    • Society of Inherited Metabolic Disorders
9:15 – 10:15 a.m

NOMINATION/EVALUATION PROCESS FOR CANDIDATE CONDITIONS ON THE UNIFORM SCREENING PANEL

James Perrin, M.D., FAAP
Professor of Pediatrics, Harvard Medical School Director,
Division of General Pediatrics
Director, Center for Child and Adolescent Health Policy,
Harvard Medical School
MassGeneral Hospital for Children

Nancy S. Green, M.D.
Divison of Pediatric Hematology
Associate Dean for Clinical Reseach Operations
Columbia University Medical Center

10:15 – 10:30 a.m.

BREAK

10:30 – 11 a.m.

COMMITTEE REVIEW OF NOMINATION FORM

11 – 11:30 a.m.

SECRETARY’S ADVISORY COMMITTEE ON GENETICS, HEALTH AND SOCIETY: WORKGROUP ON OVERSIGHT OF GENETIC TESTS

Andrea Ferreira-Gonzalez, Ph.D.
Professor of Pathology
Director of Molecular Diagnostics Laboratory
Virginia Commonwealth University

11:30 a.m. – 12:30 p.m

UPDATE FROM FEDERAL AGENCIES: RELEVANT TO
NEWBORN SCREENING

Agency for Healthcare Research and Quality
Denise Dougherty, Ph.D.
Committee Member

Centers for Disease Control and Prevention
William H. Hannon, Ph.D.
Chief, Biochemcal Branch
Divison of Laboratory Sciences
National Center for Environmental Health

Health Resources and Services Administration
Peter van Dyck, M.D., M.P.H., M.S.
Committee Member

National Institutes of Health
Duane Alexander, M.D.
Committee Member

12:30 – 1:30 p.m.

WORKING LUNCH

1:30 – 2:15 p.m.

PUBLIC COMMENTS

2:15 – 2:30 p.m. BREAK
2:30 – 5 p.m.

SUBCOMMITTEE SESSIONS

  • Subcommittee on Laboratory Standards and Procedures
    Continental C Room
  • Subcommittee on Education and Training
    Continental B Room
  • Subcommittee on Follow-up and Treatment
    Meridian C Room
5 p.m.

ADJOURN

Tuesday, September 18, 2007
8 – 8:45 a.m. CONTINENTAL BREAKFAST (Committee Members and Representatives)
8:45 – 10:15 a.m.  SUBCOMMITTEE REPORTS AND DISCUSSION
  • Subcommittee on Laboratory Standards and Procedures
    Amy Brower, Ph.D.
  • Subcommittee on Education and Training
    Gregory A. Hawkins, Ph.D.
  • Subcommittee on Follow-up and Treatment
    Coleen Boyle, Ph.D., M.S.
10:15– 10:30 a.m.

LEGISLATIVE UPDATE: AMERICAN ACADEMY OF PEDIATRICS

Cindy Pellegrini
Associate Director
Department of Federal Affairs
American Academy of Pediatrics

10:30 – 10:45 a.m.

BREAK

10:45 – 11:15 a.m.

Workgroup on Research Agenda

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

11:15 – 11:30 a.m.

GENETIC ALLIANCE

Sharon F. Terry, M.A.
President and Chief Executive Officer
Genetic Alliance

11:30 a.m. – noon

CONSUMER PERSPECTIVES IN NEWBORN SCREENING:
HRSA FUNDED INITIATIVES

Sharon F. Terry, M.A.
President and Chief Executive Officer 
Genetic Alliance

noon– 1 p.m. WORKING LUNCH
1 – 1:15 p.m. UPDATE FROM THE PERSONALIZED HEALTHCARE WORKGROUP

Gregory J. Downing, D.O., Ph.D.
Project Director
Personalized Health Care
Immediate Office of the Secretary
Department of Health and Human Services
1:15 – 2 p.m.

COMMITTEE BUSINESS

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

  • Increase in Congenital Hypothyroidism in New York and the United States
  • Patent on Technologies used in Newborn Screening
  • Agenda Items for January 2008 Meeting
  • Calendar for 2008 Meetings
  • Standard Operating Procedures
2 p.m ADJOURN