If you are interested in muscular dystrophy research, you need to know about the MDCC…
What is the MDCC?
You may have previously come across the acronym “MDCC” posted on MDA’s website or social media pages. MDCC stands for the Muscular Dystrophy Coordinating Committee. The Committee was established under the MD-CARE Act (formally called the Muscular Dystrophy Community Assistance Research and Education Amendments of 2001 (Public Law No. 107-84). The Act was historic as it was the first law to focus on the muscular dystrophies, and MDA is proud to have been part of the collaborative effort that advocated strongly for this bill. The Act created centers of excellence called Paul D. Wellstone Muscular Dystrophy Cooperative Research Centers (MDCRCs); established programs at the Centers for Disease Control (CDC) focused on collecting data, improving diagnosis and developing care considerations; and directed the National Institutes of Health (NIH) and other government agencies to convene the research and clinical communities to develop a plan to coordinate research efforts. These efforts would be guided by a steering committee, which became the MDCC, that would report to Congress.
Why is the MDCC Important?
The MDCC is critical because it brings together Institutes across NIH with other federal agencies, patient organizations and members of the muscular dystrophy community to coordinate research and patient care activities. This coordination ensures that knowledge is shared and helps maximize opportunities for collaboration while minimizing duplication of efforts. One of the Committee’s main charges is to develop a roadmap identifying the group’s priorities and objectives, which is called the Action Plan. The first Action Plan was developed in 2005 and the current Action Plan was finalized in 2015.
What does the Action Plan Call For?
The 2015 Action Plan identifies specific research objectives and other goals to help better understand the diseases, accelerate diagnosis and treatment and to help improve the lives of those living with muscular dystrophy. The Plan reflects the input of researchers and clinicians, patient advocacy groups, the various federal agencies represented on the Committee, individuals affected by muscular dystrophy and other stakeholders. The Plan covers a broad range of issues and identifies more than eighty objectives organized into five general priority areas: (1) understanding causes of the muscular dystrophies; (2) screening and diagnosis; (3) developing treatments; (4) preparing for clinical trials; and (5) providing care, management and access to services.
Who are the Members of the MDCC?
The MDCC comprises 15 members. Two-thirds of the MDCC members are representatives from government agencies who are involved in activities relevant to the muscular dystrophies and the remaining one-third are representatives from the general public who have a specific interest in or knowledge of the muscular dystrophies. The Acting Chair is Stephen Katz, M.D., PhD, Director, National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS). MDA’s Executive VP and Chief Medical & Scientific Officer, Dr. Valerie Cwik, is a current member of the MDCC.
Learn What’s Happening at The MDCC
Twice each year, the MDCC holds open public meetings that you may attend in person or watch live via webcast. To learn more about past meetings and the upcoming meeting scheduled for April 27, 2016, click here.
