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 MD-CARE Act directed the Committee to develop a plan for conducting and supporting research and education on muscular dystrophy through the national research institutes, and to submit this plan to Congress within the first year of the establishment of the MDCC. The MDCC has conducted two stages of planning. The first stage led to the Muscular Dystrophy Research and Education Plan for NIH, which was submitted to Congress in August 2004. This formed the basis for a subsequent, more intensive planning process that produced the MDCC Action Plan for the Muscular Dystrophies (approved by the MDCC in December 2005). The Action Plan contains specific research objectives that are appropriate to the missions of all MDCC member agencies and organizations and thus serves as a central focus for coordination of research in muscular dystrophy.
MDCC Organization and Planning:
Request for Information (RFI) on the Draft 2015 Action Plan for the Muscular Dystrophies (Deadline: March 10, 2015):
The NIH, together with the Muscular Dystrophy Coordinating Committee (MDCC), is leading an effort to update the Action Plan for the Muscular Dystrophies, which was first released in 2005. There have been significant advances in muscular dystrophy research since the Plan was first released. An update of the Plan is intended to reflect this progress and to highlight new challenges and opportunities. To help inform this planning process, the NIH and the MDCC welcome comments from the public regarding this draft of the 2015 plan (PDF, 1.06MB). This draft Plan contains research objectives and other goals for reducing the burden of the muscular dystrophies on patients and their families. It was developed with input from basic and clinical researchers, physicians, patients and representatives from patient advocacy groups and government agencies. To ensure that all stakeholders in muscular dystrophy research and patient care have an opportunity to comment and contribute to this document, we welcome input through this public site.
Information for Patients and Families:
Information for Researchers:
For more information contact :
Last updated February 13, 2015