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Fifteenth
Meeting
October 1-2, 2008
Capital Hilton
Washington, DC
Agenda
| WEDNESDAY,
OCTOBER 1, 2008 |
| 1:30
P.M. – 1:45 P.M. |
OPENING
REMARKS R. RODNEY
HOWELL, M.D.
COMMITTEE CHAIR
- APPROVAL OF MINUTES FROM AUGUST
2008 MEETING
|
| 1:45
P.M. – 2:15 P.M. |
DECISION
CRITERIA AND PROCESS WORKGROUP
NANCY GREEN, M.D.
COMMITTEE CONSULTANT |
| 2:15
P.M. – 3:00 P.M. |
EVIDENCE
REVIEW WORKGROUP: REPORT ON THE CANDIDATE
NOMINATION: (POMPE DISEASE)
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
|
| 3:00
P.M. – 3:15 P.M. |
BREAK |
| 3:15
P.M. – 3:45 P.M. |
PUBLIC COMMENT |
| 3:45
P.M. – 5:00 P.M. |
FINANCIAL
REIMBURSEMENT AND INSURANCE COVERAGE
FOR MEDICAL FOODS
- MEDICAL FOODS WORKGROUP
SUSAN A. BERRY, M.D.
PROFESSOR AND DIRECTOR
DIVISION OF GENETICS AND METABOLISM
DEPARTMENT OF PEDIATRICS
UNIVERSITY OF MINNESOTA
- STATE POLICIES ON PAYMENT
FOR DIETARY TREATMENT OF DISORDERS
IDENTIFIED THROUGH NEWBORN SCREENING,
NCC REPORT
ALISSA L. JOHNSON,
M.A.
PRINCIPAL CONSULTANT
JOHNSON POLICY CONSULTING
|
| 5:00
P.M. |
ADJOURN |
| THURSDAY,
OCTOBER 2, 2008 |
7:30
A.M. –
8:00 A.M. |
CONTINENTAL
BREAKFAST
(COMMITTEE MEMBERS AND REPRESENTATIVES)
|
| 8:00
A.M. – 10:30 A.M. |
SUBCOMMITTEE
SESSIONS
- LABORATORY STANDARDS
AND PROCEDURES
- EDUCATION AND TRAINING
- FOLLOW-UP AND TREATMENT
|
| 10:30
A.M. – 11:00 A.M. |
BREAK
(AND HOTEL CHECK-OUT) |
| 11:00
A.M. – 12:00 P.M. |
PERSONALIZED
HEALTHCARE WORKGROUP: UPDATE ON SUBGROUP
ON NEWBORN SCREENING
- NEWBORN SCREENING HEALTH
IT STANDARDS AND USE CASE RECOMMENDATIONS
STEPHEN M. DOWNS, M.D.,
M.S.
CO-CHAIR, SUBGROUP ON NEWBORN
SCREENING
ASSOCIATE PROFESSOR AND DIRECTOR
CHILDREN’S HEALTH SERVICES
RESEARCH
INDIANA UNIVERSITY SCHOOL OF MEDICINE
- USE CASE PROCESS AND
COMMUNITY INPUT
ALAN E. ZUCKERMAN, M.D.
CONSULTANT, AHIC PERSONALIZED
HEALTHCARE WORKGROUP
CO-CHAIR CCHIT INTEROPERABILITY
WORKGROUP
PRIMARY CARE INFORMTICS PROGRAM
DIRCTOR
GEORGETOWN UNIVERSITY SCHOOL OF
MEDICINE
|
12:00
P.M. –
1:00 P.M. |
LUNCH |
| 1:00
P.M. – 1:45 P.M. |
EMERGENCY
PREPAREDNESS AND CONTINGENCY PLANNING
FOR NEWBORN SCREENING
- HHS NATIONAL CONTINGENCY
PLAN FOR NEWBORN SCREENING
SUSAN MCCLURE
ASSOCIATE DIRECTOR FOR PROGRAM
AND PARTNERSHIP DEVELOPMENT
DIVISION OF LABORATORY SCIENCES
NATIONAL CENTER FOR ENVIRONMENTAL
HEALTH
CENTERS FOR DISEASE CONTROL
AND PREVENTION
- NEWBORN SCREENING PREPAREDNESS/
CONTINGENCY PLANNING FRAMEWORK:
A WHITE PAPER BY THE ASSOCIATION
OF PUBLIC HEALTH LABORATORIES
(APHL)
JANE GETCHELL, DR.PH
APHL ORGANIZATION REPRESENTATIVE
TO THE COMMITTEE
- EMERGENCY PREPAREDNESS
FOR NEWBORN SCREENING AND GENETIC
SERVICES: A REPORT BY THE REGIONAL
COLLABORATIVES’ NATIONAL
COORDINATING CENTER (NCC)
MICHAEL S. WATSON,
PH.D., FACMG
EXECUTIVE DIRECTOR
AMERICAN COLLEGE OF MEDICAL
GENETICS
REPRESENTATIVE TO THE COMITTEE
|
| 1:45
P.M. – 2:30 P.M. |
SUBCOMMITTEE
REPORTS
- SUBCOMMITEE ON LABORATORY
STANDARDS AND PROCEDURES
GERARD VOCKLEY, M.D.,
PH.D.
COMMITTEE MEMBER
- SUBCOMMITEE ON EDUCATION
AND TRAINING
JANA MONACO AND
TRACY L. TROTTER, M.D., F.A.A.P.
COMMITTEE MEMBERS
- SUBCOMMITEE ON FOLLOW-UP
AND TREATMENT
COLEEN BOYLE, PH.D., M.S.
COMMITTEE MEMBER
|
| 2:30
P.M. – 3:00 P.M. |
COMMITTEE
BUSINESS
R. RODNEY HOWELL,
M.D.
COMMITTEE CHAIR
- AGENDA ITEMS FOR NEXT MEETING
- NOVEMBER 24, 2008 MEETING
(AUDIO OR WEBCAST)
- FEBRUARY 26-27, 2009 MEETING
- CALENDAR FOR 2009 MEETINGS
|
| 3:00
P.M. |
ADJOURN |
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