NIH VideoCast - Muscular Dystrophy Coordinating Committee (MDCC) Meeting - November 2015

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Muscular Dystrophy Coordinating Committee (MDCC) Meeting - November 2015

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Chapter		Description	Position
1		Welcome and Introductions - Steve Katz, Acting Chair MDCC	0:00:05
2		Eunice Kennedy Shriver National Institute of Child Health and Human Development - Catherine Spong, Acting Director NICHD	0:17:44
3		MDCC Action Plan: Member Organization Mission Landscape and Progress Monitoring - Glen Nuckolls	0:41:38
4		MDF Patient-Centered Therapy Development Meeting Report - Sharon Hesterlee, Myotonic Dystrophy Foundation	1:53:30
5		FSHD Trial Readiness Meeting Report - Rabi Tawil, University of Rochester	2:17:18
6		FSHD International Research Consortium and Planning Workshop Report - Dan Perez, FSH Society	2:41:00
7		FDA Biomarker Qualification Program - Shashi Amur, Center for Drug Evaluation and Research, FDA	3:03:03
8		Imaging Biomarkers for the Muscular Dystrophies - Krista Vandenborne, University of Florida	3:40:11
9		Biochemical Biomarkers for the Duchenne Muscular Dystrophies - Yetrib Hathout, Children’s National Medical Center, DC	4:26:10
10		NIH Office of Rare Disease Research - Petra Kaufmann, Director ORDR, NCATS	5:07:18

Air date:	Friday, November 13, 2015, 8:30:00 AM Time displayed is Eastern Time, Washington DC Local
Views:	Total views: 200 (51 Live, 149 On-demand)
Category:	Advisory Boards and Councils
Runtime:	05:55:34
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 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 the National Institutes of Health (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 committee members, representing government agencies, patient advocacy groups, other voluntary health organizations, and patients and their families to update one another on progress relevant to the Action Plan for the Muscular Dystrophies and to coordinate activities and discuss gaps and opportunities leading to better understanding of the muscular dystrophies, advances in treatments, and reduced disease burden.

Author:	National Institutes of Health

CIT Live ID:	16965
Permanent link:	https://videocast.nih.gov/watch=16965

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