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Maternal & Child Health

Advisory Committee on Heritable Disorders in Newborns and Children
 

Tenth Meeting
May 17-18, 2007
Ronald Reagan Building and International Trade Center
Washington, DC

Agenda

Thursday, May 17, 2007 
8:30 a.m. – 9:00 a.m. CONTINENTAL BREAKFAST (Committee Members and Representatives)

9:00 a.m. – 9:15 a.m.

Rotunda Room

OPENING REMARKS

• Review of Committee Correspondence
• Approval of Minutes from June 2006 meeting

R. Rodney Howell, M.D.
Committee Chair

9:15 a.m. – 9:45 a.m.

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

James Perrin, M.D.

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
9:45 a.m. – 10:15 a.m

REPORT FROM THE APRIL 2007 WORKGROUP MEETING:
THE ROAD MAP TO IMPLEMENT LONG-TERM FOLLOW-UP AND TREATMENT IN NEWBORN SCREENING

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


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
Duke Children’s Hospital and Health Center
Duke University
10:15 a.m. – 10:30 a.m. 

DISCUSSION
10:30 a.m.– 10:45 a.m.

BREAK
10:45 a.m.– 11:30 a.m.

REGIONAL GENETIC AND NEWBORN SCREENING SERVICES COLLABORATIVES:

Long-Term Follow-Up Projects

Stephen M. Downs, M.D., M.S.

Associate Professor and Director
Children's Health Services Research
Indiana University School of Medicine

James Eckman, M.D.

Professor
Department of Hematology and Oncology
Winship Cancer Institute
Emory University School of Medicine, Atlanta, GA
11:30 a.m. – 11:45 a.m.

DISCUSSION
11:45 a.m. – 1:00 p.m.

WORKING LUNCH
1:00 p.m. – 1:30 p.m.

STATUS OF THE STATES-AN UPDATE

  • GLUCOSE-6-PHOSPHATE DEHYDROGENASE (G6PD) DEFICIENCY
  • SEVERE COMBINED IMMUNODEFICIENCY

    Bradford Therrell, Ph.D.

    Director
    National Newborn Screening and Genetics Resource Center

1:30 p.m. – 1:45 p.m.

Department of Defense Newborn Screening Program

Lt. Col. David S. Louder, III, M.D.

Chief Consultant for Maternal-Child Medicine
Air Force Medical Corps
AFMSA/SGOC
1:45 p.m. – 2:00 p.m.

BREAK
2:00 p.m. – 5:00 p.m.

SUBCOMMITTEE MEETINGS

  • SUBCOMMITTEE ON LABORATORY STANDARDS AND PROCEDURES

    INTERNATIONAL GATEWAY ROOM

  • SUBCOMMITTEE ON EDUCATION AND TRAINING

    ROTUNDA COAT ROOM
5:00 p.m.

ADJOURN
FRIDAY, MAY 18 
8:00 a.m. – 8:30 a.m. CONTINENTAL BREAKFAST (Committee Members and Representatives)
8:30 a.m. – 10:00 a.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.
10:00 a.m. – 10:15 a.m. STANDARD OPERATING PROCEDURES FOR ACHDGDNC
10:15 a.m. – 10:45 a.m.

BREAK
10:45 a.m.– 11:30 a.m.

REGIONAL LABORATORY PERFORMANCE

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

T. Denny Sanford Professor of Pediatrics
Professor of Laboratory Medicine
Vice-Chair of Academic Affairs and Intramural Practice,
Department of Laboratory Medicine and Pathology
Mayo Clinic College of Medicine, Rochester, MN

Marzia Pasquali, Ph.D. 

Associate Professor of Pathology (Clinical)
University of Utah School of Medicine
Medical Director, Biochemical Genetics and
Supplemental Newborn Screening

11:30 a.m. – 11:45 a.m.

FEDERAL LEGISLATION: AN UPDATE

Marina Weiss, Ph.D.

Senior Vice President
Public Policy and Government Affairs
March of Dimes Birth Defects Foundation
11:45 a.m. – 1:00 p.m. WORKING LUNCH
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

  • AGENDA ITEMS FOR SEPTEMBER 2007 MEETING
  • CALENDAR FOR 2007/2008 MEETINGS
3:00 p.m  ADJOURN