Ninth Meeting of the Muscular Dystrophy Coordinating Committee

Hilton Rockville Hotel and Executive Meeting Center
Rockville, MD
April 20, 2011

 

Agenda

7:30-8:00 am
Registration and Continental Breakfast

8:00-8:10 am
Welcome, Introductions, and Conflict of Interest Statement
Story Landis, National Institute of Neurological Disorders and Stroke (NINDS)
John Porter, NINDS

8:10-8:55 am
NIH Updates

NIH Overall Activities and Funding Report
ARRA Funding for Muscular Dystrophy, John Porter, NINDS

Paul D. Wellstone Muscular Dystrophy Cooperative Research Centers Report Glen Nuckolls, National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)

8:55-9:10 am
Use of NIH RePORTER Database
James Onken, NIH Office of the Director

9:10-9:30 am
Center for Disease Control and Prevention (CDC) Activities
Mark Swanson, CDC

9:30-9:50 am
Break

9:50-10:35 am
NIH Therapy Development Resources to Leverage for Muscular Dystrophy
John McKew, NIH Center for Translational Therapeutics (NCTT)

10:35-11:20 am
Changes in the Rare Disease Landscape at the Food and Drug Administration (FDA) and NIH and Impact for Muscular Dystrophy
Anne Pariser, FDA | Steve Groft, NIH Office of Rare Disease Research (ORDR)

11:20-11:35 am
New Federal Policies and Initiatives Impacting Muscular Dystrophy (Federal hESC policy update; FDA-NIH Joint Leadership Council; Other)
Story Landis, NINDS

11:35-12:00 pm
General Discussion of Morning Session Topics

12:00-12:45 pm
Working Lunch-Continued Discussion of Morning Session Topics

12:45-1:25 pm
Research Update: Building upon a Mechanistic Breakthrough-Lessons Learned for the Muscular Dystrophies
Stephen Tapscott, Fred Hutchinson Cancer Research Center

1:25-2:45 pm
Challenges of Clinical Trials in Muscular Dystrophy-Triaging Candidate Opportunities, Trial Recruitment, and Communication of Trial Rationale and Results
Kurt Fischbeck, NINDS | Berch Griggs, University of Rochester | Pat Furlong, Parent Project Muscular Dystrophy

2:45-3:05 pm
Break

3:05-4:00 pm
Group Discussion: MDCC Joint Goals for Coming Year
Story Landis, NINDS

Action Plan Revisited
Formation of Funding Coordination Subcommittee?
Other Subcommittees?
Other Potential Goals?

4:00-4:30 pm
Public Comment Period

4:30 pm
Adjourn