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Muscular Dystrophy Coordinating Committee


Muscular Dystrophy Coordinating Committee
March 22, 2004
8:30 am - 4:00 pm
Bethesda Marriott Suites, Salons 1 and 2
6711 Democracy Boulevard
Bethesda, MD 20814


Purpose:
The Muscular Dystrophy Coordinating Committee (MDCC) is mandated by the MD-CARE Act to "develop a plan for conducting and supporting research and education on muscular dystrophy through the national research institutes." The purpose of this second meeting of the MDCC is to review and discuss a draft muscular dystrophy research and education plan for NIH with the objective of finalizing the goals.

Agenda:
8:30 - 8:45 am
Welcome and Introductions - Dr. Stephen Katz, Chair, MDCC
8:45 - 9:00 am
Review of Confidentiality and Conflict of Interest Procedures Process of Developing the Draft Plan and Overview of Draft Plan Ms. Lorraine Fitzsimmons, Executive Secretary, MDCC
Specific Discussions:
9:00 - 10:00 am
Broad Heading 1: Understanding Mechanisms of Disease (Dr. Kurt Fischbeck, Discussant)
10:00 - 10:15 am BREAK
10:15 - 11:00 am
Broad Heading 2: Screening and Diagnosis (Dr. Eric Hoffman, Discussant)
11:00 - 12:00 pm
Broad Heading 3: Treatment Strategies (Dr. Jerry Mendell, Discussant)
12:00 - 1:00 pm LUNCH
1:00 - 1:45 pm
Broad Heading 4: Living with MD: Rehabilitation, Quality of Life, and Psychosocial Issues (Dr. James Hanson, Discussant)
1:45 - 2:15 pm
Broad Heading 5: Research Infrastructure Needs (Dr. Stephen Katz and Dr. Story Landis, Discussants)
2:15 - 2:30 pm BREAK
2:30 - 3:15 pm
Epidemiological Issues
- CDC Activities - Dr. Coleen Boyle
- National Registry of Myotonic Dystrophy and Facioscapulohumeral Muscular Dystrophy at the University of Rochester - Dr. Richard Moxley
3:15 - 3:45 pm
Next Steps and Discussion of Timeline for Finalizing the Plan
3:45 - 4:00 pm
Other Items of Interest and Concluding Remarks

Last updated December 27, 2013