HRSA - U.S Department of Health and Human Services, Health Resources and Service Administration HHS
Home
Questions
Order Publications
 
Maternal & Child Health

Advisory Committee on Heritable Disorders in Newborns and Children
 

Seventeenth Meeting
February 26-27, 2009
Bethesda Marriott
Bethesda, MD

Agenda
THURSDAY, FEBRUARY 26, 2009
7:30 A.M.– 8:30 A.M.
 CONTINENTAL BREAKFAST (Committee Members and Presenters)
Bethesda Room – Level 1
8:30 A.M.– 8:45 A.M.
 WELCOME
(Salon A, B & C - Level 1)  
  • R. Rodney Howell, M.D.
    Committee Chair
      • Approval of Minutes from November 24, 2008 Meeting
      • Committee Correspondence
8:45 A.M.. - 11: 15 A.M. 
 SUBCOMMITTEE MEETINGS
  • Follow-up and Treatment
    Salon A - Level 1
  • Education and Training
    Chevy Chase Room - Level 1

  • Laboratory Standards
    Potomac Room - Level 1
11:15 A.M.– 11:30 A.M.
 BREAK (Committee Members and Presenters)
Bethesda Room – Level 1
11:30 A.M. - 11:45 A.M. UPDATE ON AMERICAN HEALTH INFORMATION COMMUNITY’S NEWBORN SCREENING USE CASE   
  • Alan E. Zuckerman, M.D.
    Consultant, AHIC Personalized Healthcare Workgroup
    Co-Chair CCHIT Interoperability Workgroup
    Primary Care Informatics Program Director
    Georgetown University School of Medicine
11:45 A.M.– 12:45 P.M.
 LUNCH (Committee members and presenters)
Bethesda Room – Level 1
12:45 P.M. – 1:30 P.M. DECISION CRITERIA AND PROCESS WORKGROUP
  • Ned Calonge, M.D., M.P.H.                                   
    Committee Member
1:30 P.M. – 2:15 P.M. EVIDENCE REVIEW WORKGROUP: FINAL DRAFT REPORT ON THE CANDIDATE NOMINATION OF SEVERE COMBINED IMMUNODEFICIENCY (SCID)
  • Ellen Lipstein, M.D.
    Fellow, Harvard Pediatric Health Services Fellowship
    Center for Adolescent and Child Health Policy
    MassGeneral Hospital for Children
2:15 P.M. - 2:30 P.M. PUBLIC COMMENT ON SCID REVIEW
  • Jennifer M. Puck, M.D.
    SCID Nominator - Introduction
    Department of Pediatrics
    University of California – San Francisco
  • Mei W. Baker, M.D.
    Assistant Professor, Department of Pediatrics
    Science Advisor, Newborn Screening Program
    State Laboratory of Hygiene
    University of Wisconsin – Madison
  • Barbara Ballard
    Parent and Administrator
    SCID Network of Families
  • Marcia Boyle
    President and Founder
    Immune Deficiency Foundation
2:30 P.M. - 3:00 P.M. COMMITTEE DISCUSSION AND DECISION ON THE NOMINATION OF SCID TO THE RECOMMENDED UNIFORM SCREENING PANEL
  • Gerard Vockley, M.D., Ph.D. (discussant)
    Committee Member
3:00 P.M. - 3:15 P.M.
BREAK (Committee Members and Presenters)
Bethesda Room – Level 1
3:15 P.M. - 3:45 P.M. NATIONAL INSTITUTES OF HEALTH REPORT:
  • Duane Alexander, M.D.
    Committee Member
    • The Newborn Screening Translational Research Network
    • Novel Technologies in Newborn Screening Initiative
    • The National Children’s Study
3:45 P.M. - 4:45 P.M. UPDATE ON HRSA AND CDC LONG TERM FOLLOW-UP PROJECTS: INTERSECTING THE TRANSLATIONAL
RESEARCH NETWORK
  • Anne Marie Comeau, Ph.D.
    Deputy Director
    New England Newborn Screening Program
    University of Massachusetts Medical School
  • Lisa Feuchtbaum, Dr.P.H, M.P.H.
    Research Scientist IV
    Genetic Disease Screening Program
    California Department of Health Services      
  • Nicola Longo, M.D., Ph.D.
    Professor and Chief
    Division of Medical Genetics
    University of Utah
  • Michael Watson, Ph.D.
    Executive Director
    American College of Medical Genetics
4:45 P.M. - 5:00 P.M. DISCUSSION
5:00 P.M. ADJOURN
FRIDAY, FEBRUARY 27, 2009
7:30A.M. – 8:30 A.M.

 CONTINENTAL BREAKFAST (Committee Members and Presenters)
Bethesda Room – Level 1
8:30 A.M. – 9:45 A.M.
(Salon A, B & C - Level 1)		 TRANSLATIONAL RESEARCH POLICIES: INTRODUCTION TO INSTITUTIONAL REVIEW BOARDS, INFORMED DECISION-MAKING AND CONSENT
  • Jeffrey R. Botkin, M.D., M.P.H. - Moderator
    Department of Pediatrics
    University of Utah School of Medicine
  • Edward Bartlett
    Division of International Activities
    Office of Human Research Protection
  • Alan Fleischman, M.D.
    Committee Representative
9:45 A.M. – 10:15 A.M. COMMITTEE DISCUSSION
10:15 A.M. – 10:45 A.M.
 BREAK
Bethesda Room – Level 1
10:45 A.M. – 11:30 A.M. RESIDUAL BLOOD SPOTS: POLICIES AND USES
  • William Hannon, Ph.D.
    National Newborn Screening and Genetics Resource Center
  • Jeffrey R.  Botkin, M.D., M.P.H.
    Department of Pediatrics
    University of Utah School of Medicine
11:30 A.M. – 12:30 P.M.

 LUNCH
Bethesda Room – Level 1
12:30 P.M. – 1:30 P.M. SUBCOMMITTEE REPORTS AND DISCUSSION
  • Subcommittee on Laboratory Standards and Procedures

    Gerard Vockley, M.D., Ph.D.
    Committee Member
  • Subcommittee on Education and Training

    Jana Monaco and Tracy L. Trotter, M.D., F.A.A.P.
    Committee Members
  • Subcommittee on Follow-up and Treatment     
       
    Coleen Boyle, Ph.D., M.S.
    Committee Member
1:30 P.M. – 1:45 P.M. PUBLIC COMMENT
1:45 P.M. – 3:00 P.M. COMMITTEE BUSINESS

  • R. Rodney Howell, M.D.
    Committee Chair
  • Agenda Items for the May 2009 meeting
  • Calendar for the September 2009 Meeting
  • President’s Council on Bioethics: The Changing Moral Focus of Newborn Screening
  • ACHDNC:  Policies and Procedures for Operation and the Development of Recommendations for Screening Newborns and Children for Heritable Disorders and for the Heritable Disorders Program
3:00 P.M. ADJOURN