NIH VideoCast - Muscular Dystrophy Coordinating Committee (MDCC) Meeting - April 2016

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Muscular Dystrophy Coordinating Committee (MDCC) Meeting - April 2016

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Chapter		Description	Position
1		Welcome and introductions - Stephen I. Katz, MDCC Chair	0:00:05
2		Paving the way to therapies and a cure for dysferlinopathy - Plavi Mittal, Jain Foundation	0:17:26
3		Pulmonary Outcome Measures for Duchenne - Abby Bronson, Parent Project Muscular Dystrophy	1:02:26
4		2016 MDA Clinical Conference - Valerie Cwik, Muscular Dystrophy Association	1:24:07
5		Using ClinicalTrials.gov and Other Sources of Information about Clinical Trials - Deborah Zarin, NLM, NIH	1:40:37
6		The Duchenne Regulatory Science Consortium - Jane Larkindale, Critical Path Institute	2:18:40
7		Patient access to care, services and medical equipment - Annie Kennedy, Parent Project Muscular Dystrophy	3:00:50
8		Access to Genetic Testing and Interdisciplinary Care - Kristin Stephenson, Muscular Dystrophy Association	3:45:48
9		Applying for Disability Benefits: The SSA Perspective - Michael Goldstein and Alayna Ness, Office of Disability Policy, SSA	4:27:52
10		CMS Resources and Services - Terri Postma, Centers for Medicare & Medicaid Services	5:24:15
11		Data on the NIH supported muscular dystrophy research workforce - Glen Nuckolls, NINDS, NIH	6:24:15

Air date:	Wednesday, April 27, 2016, 8:30:00 AM Time displayed is Eastern Time, Washington DC Local
Views:	Total views: 242 (68 Live, 174 On-demand)
Category:	Advisory Boards and Councils
Runtime:	07:05:27
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 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 improvements in patients’ and their families’ lives.

Author:	NIH

CIT Live ID:	18510
Permanent link:	https://videocast.nih.gov/watch=18510

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