NIH VideoCast - Muscular Dystrophy Coordinating Committee (MDCC) Meeting - April 2014

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Muscular Dystrophy Coordinating Committee (MDCC) Meeting - April 2014

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Chapter		Description	Position
1		Welcome, Introductions, and Conflict of Interest Statement - Alan Guttmacher, MDCC Chair, NICHD/NIH, John Porter, MDCC Executive Secretary, NINDS/NIH	0:00:05
2		Scientific Update on Congenital Muscular Dystrophy - Carsten Bonnemann, NINDS/NIH	0:12:30
3		Congenital Muscular Dystrophy Report - Anne Rutkowski, Cure CMD	0:53:07
4		Wellstone Centers Report - Glen Nuckolls, NIAMS/NIH	1:17:57
5		Department of Defense Duchenne Muscular Dystrophy Program Report - Marielena McGuire, DMDRP	1:38:01
6		Muscular Dystrophy Association Report - Valerie Cwik, MDA	1:59:27
7		Facioscapulohumeral Muscular Dystrophy Report - June Kinoshita, FSH Society	2:24:26
8		Development and Use of Patient-Reported Outcome Measures in Myotonic Dystrophy and Facioscapulohumeral Muscular Dystrophy - Chad Heatwole, University of Rochester	2:50:22
9		Working Lunch/Open Discussion	3:16:45
10		NIH Report - John Porter, NINDS/NIH	3:32:15
11		Centers for Disease Control and Prevention Report - Julie Bolen, CDC	4:13:21
12		Development of FDA Guidance for Regulating Duchenne Muscular Dystrophy Products - Pat Furlong, Parent Project Muscular Dystrophy	4:36:08
13		Duchenne Muscular Dystrophy Report - Brian Denger, Parent Project Muscular Dystrophy	5:02:24
14		A Model of Effective Coordination of Expertise and Resources in Therapy Development - Justin Fallon, Brown University	5:19:05
15		Improving Coordination through the MDCC	6:00:50
16		Public Comment Period	6:29:40

Air date:	Monday, April 7, 2014, 8:30:00 AM Time displayed is Eastern Time, Washington DC Local
Views:	Total views: 413 (211 Live, 202 On-demand)
Category:	Advisory Boards and Councils
Runtime:	06:32:56
Closed captioning:	Check box to display CC outside of the video Note: You can drag the captioning window around and resize it
Description:	The Muscular Dystrophy Community Assistance, Research, and Education Amendments of 2001 ("MD-CARE Act"; P.L. 107-84) authorized the establishment of the Muscular Dystrophy Coordinating Committee (MDCC) to coordinate activities across the National Institutes of Health (NIH) and with other Federal health programs and activities relevant to the various forms of muscular dystrophy. The MDCC is a Congressionally mandated committee designed to coordinate research activities across NIH and with other Federal health programs and activities relating to the various forms of muscular dystrophy, including Duchenne, myotonic, facioscapulohumeral muscular dystrophy and other forms of muscular dystrophy. The purpose of this meeting is to bring together the committee members to update one another on individual agency efforts and to discuss planning for revision of the Action Plan for the Muscular Dystrophies.

Author:	NIH

CIT Live ID:	13818
Permanent link:	https://videocast.nih.gov/watch=13818

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