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Maternal & Child Health

Advisory Committee on Heritable Disorders in Newborns and Children

 

Ninth Meeting
December 18-19, 2006
Hilton Washington Hotel
Washington, DC

Agenda

Monday, December 18, 2006 
8:30 a.m. – 9:00 a.m. CONTINENTAL BREAKFAST (Committee Members and Representatives)
9:00 a.m. – 9:15 a.m.

HEALTH RESOURCES AND SERVICES ADMINISTRATION
WELCOME

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

9:15 a.m. – 9:30 a.m.

OPENING REMARKS

Review of Committee Correspondence
Approval of Minutes from June 2006 meeting

R. Rodney Howell, M.D.
Committee Chair

9:30 a.m. – 10:30 a.m.

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

Report from the October 2006 Workgroup Meeting,
“Process for Evaluation and Gathering Evidence”

Nancy S. Green, M.D.
Medical Director
March of Dimes Birth Defects Foundation

10:30 a.m. – 10:45 a.m

BREAK

10:45 a.m. – 11:45 a.m

Report from the October 2006 Workgroup Meeting,
“Process for Evaluation and Gathering Evidence”
con’t

Stephen M. Downs, M.D., M.S.
Associate Professor and Director
Children's Health Services Research
Indiana University School of Medicine

Alex Kemper, M.D., M.P.H., M.S.
Associate Professor
Department of Pediatrics
11:45 a.m. – 12:15 p.m.

REGIONAL GENETIC AND NEWBORN SCREENING SERVICES COLLABORATIVES: AN UPDATE

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

12:15 p.m. – 1:15 p.m.

WORKING LUNCH

1:15 p.m. – 1:30 p.m.

FEDERAL LEGISLATION: AN UPDATE

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

1:30 p.m. – 1:45 p.m. REPORT ON INTERNATIONAL NEWBORN SCREENING MEETINGS

R. Rodney Howell, M.D.
Committee Chair
1:45 p.m. –
2:00 p.m.

DISTRIBUTION OF NEWBORN SCREENING EDUCATIONAL MATERIALS TO PRIMARY CARE PROVIDERS: ACTION SHEET SURVEY REPORT

Anne Gramiak, M.P.H.
Manager, Screening Programs
American Academy of Pediatrics

2:00 p.m. – 2:15 p.m.

A PARENT’S GUIDE TO NEWBORN SCREENING: MARCH OF DIMES VIDEO ON NEWBORN SCREENING

Nancy S. Green, M.D.
Medical Director
March of Dimes Birth Defects Foundation

2:15 p.m. – 2:30 p.m.

BREAK

2:30 p.m. – 5:00 p.m.

SUBCOMMITTEE MEETINGS

5:00 p.m.

ADJOURN

Tuesday, December 19, 2006 
8:00 a.m. – 8:30 a.m. CONTINENTAL BREAKFAST (Committee Members and Representatives)
8:30 a.m. – 10:30 a.m. THE CONCEPTS OF BENEFIT AND TREATMENT

The Early History of Universal Screening for Metabolic Disorders

Jeffrey P. Brosco, M.D., Ph.D.
Associate Professor of Clinical Pediatrics,
Director, Clinical Services, Mailman Center for Child Development
University of Miami   

Current Practices and Family Perspectives

Don Bailey, Ph.D.
Distinguished Fellow
RTI International

Ellen Wright Clayton, M.D., J.D.
Professor of Pediatrics
Professor of Law
Co-Director, Center for Biomedical Ethics and Society
Vanderbilt University

10:30 a.m. – 11:00 a.m. BREAK
11:00 a.m. – 12:30 p.m.

SUBCOMMITTEE REPORTS AND DISCUSSION

Subcommittee on Follow-up and Treatment

Coleen Boyle, Ph.D., M.S.

Subcommittee on Laboratory Standards and Procedures

Amy Brower, Ph.D.

Subcommittee on Education and Training

Gregory A. Hawkins, Ph.D.

12:30 p.m. – 1:30 p.m. WORKING LUNCH
1:30 p.m. – 2:30 p.m.

PUBLIC COMMENTS

2:30 p.m. – 2:40 p.m. ASSOCIATION OF PUBLIC HEALTH LABORATORIES UPDATE ON NEWBORN SCREENING ACTIVITIES

Michael R. Skeels, Ph.D., M.P.H.
2:40 p.m. – 3:00 p.m.

COMMITTEE BUSINESS

R. Rodney Howell, M.D.
Committee Chair

Agenda Items for February 2007 Meeting

Calendar for 2007 Meetings

Standard Operating Procedures for ACHDGDNC

3:00 p.m. ADJOURN