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Maternal & Child Health

Advisory Committee on Heritable Disorders in Newborns and Children
 

Nineteenth Meeting
September 24-25, 2009
Bethesda Marriott
Bethesda, MD

Agenda

THURSDAY, SEPTEMBER 24, 2009
7:30 A.M.– 8:30 A.M.
 CONTINENTAL BREAKFAST (Committee Members and Presenters)
8:30 A.M.– 8:45 A.M.
 WELCOME
  • Approval of Minutes from May 12, 2009 Meeting
  • Committee Correspondence

R. RODNEY HOWELL, M.D.
Committee Chair

8:45 A.M.– 11:30 A.M.
 SUBCOMMITTEE MEETINGS
  • Follow-up and Treatment
  • Education and Training
  • Laboratory Standards
11:30 A.M. - 11:45 A.M. BREAK
11:45 A.M.– 12:20 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.
    Committee Member
  • Subcommittee on Follow-up and Treatment         
    Coleen Boyle, Ph.D., M.S.
    Committee Member
12:20 P.M. – 12:30 P.M. MEDICAL FOODS LEGISLATION

Christine Brown, MS
Executive Director National PKU Alliance
12:30 P.M..– 1:15 P.M.
 LUNCH (Committee Members and Presenters)
1:15 P.M. - 2:00 P.M. THE NATIONWIDE HEALTH INFORMATION NETWORK

Charles Friedman, M.D.
Deputy Director for the Office of the National Coordinator  
for Health Information Technology

2:00 P.M. - 2:15 P.M. STATUS OF THE IMPLEMENTATION OF THE NEWBORN SCREENING USE CASE

Alan Zuckerman, M.D.
Georgetown University
2:15 P.M. - 2:45 P.M. NEWBORN SCREENING CODES & TERMINOLOGY
AND AN APPROACH TO A STANDARD REPORT PAYLOAD

Kin Wah Fung, M.D.
National Library of Medicine
2:45 P.M. - 3:00 P.M. NEWBORN SCREENING WEB PORTAL CONCEPT

Gregory Downing D.O., Ph.D. and Constanze Coon, Ph.D.
Personalized Health Care Initiative, OS/HHS

3:00 P.M. - 3:15 P.M.
BREAK
3:15 P.M. - 4:00 P.M. MEASURES FOR QUALITY

Sarah Scholle, Dr.PH.
National Center for Quality Assurance

4:00 P.M. - 4:30 P.M. INTERNAL REVIEW WORKGROUP: NOMINATION OF ALPHA
THALASSEMIA: HEMOGLOBIN H DISEASE TO THE ACHDNC’S
RECOMMENDED UNIFORM SCREENING PANEL

Kwaku Ohene-Frempong, M.D.
Committee Member

4:30 P.M. - 5:00 P.M. COMMITTEE DISCUSSION
5:00 P.M. ADJOURN
FRIDAY, SEPTEMBER 25, 2009
7:30A.M. – 8:30 A.M.

 CONTINENTAL BREAKFAST (COMMITTEE MEMBERS AND PRESENTERS)
8:30 A.M. – 9:00 A.M.
 USE AND STORAGE OF RESIDUAL BLOOD SPOTS WORKGROUP:
BRIEFING PAPER REPORT

Jana Monaco
Committee Member
                                               
Brad Therrell, Ph.D.
Harry Hannon, Ph.D.
National Newborn Screening and Genetic Resource Center

                                                            
9:00 A.M. – 9:30 A.M. COMMITTEE DISCUSSION: BRIEFING PAPER

R. Rodney Howell, M.D.
Committee Chair

9:30 A.M. – 10:00 A.M. PUBLIC COMMENTS
10:00 A.M. – 10:30 A.M.
 BREAK
10:30 A.M. – 11:30 A.M. EVIDENCE REVIEW WORKGROUP: FINAL DRAFT REPORT ON THE CANDIDATE NOMINATION OF KRABBE DISEASE

James M. Perrin, M.D.
Evidence Review Workgroup Chairperson
11:30 A.M. – 12:00 P.M. PUBLIC COMMENTS
12:00 P.M.– 1:00 P.M.

 LUNCH (Committee Members and Presenters)
1:00 P.M.– 2:00 P.M. COMMITTEE DISCUSSION ON THE CANDIDATE NOMINATION OF KRABBE DISEASE

Piero Rinaldo, M.D., Ph.D.
Committee Member

2:00 P.M. – 2:30 P.M. COMMITTEE REPORT FOR CONGRESS

Alaina M. Harris, M.S.W., M.P.H.
Health Resources and Services Administration

POLICY PAPER: NEWBORN SCREENING AND HEALTH CARE REFORM

Alissa Johnson, M.A.
 Johnson Policy Consulting

2:30 P.M. – 3:00 P.M. COMMITTEE BUSINESS

  • Calendar for 2010 Committee Meetings
  • Agenda Items For January 2010 Meeting

R. Rodney Howell, M.D.
Committee Chair
3:00 P.M. ADJOURN