The Muscular Dystrophy Community Assistance Research and Education Amendments of 2001 ("MD CARE Act", ) amended the
Public Health Service Act to provide for research with respect to various forms of
muscular dystrophy, including
Duchenne,
Becker
Becker () is one of the German-language surnames, along with Bäcker and Baecker, that derive from the root, which refers to baking. The surname began as a name for a baker (and thus his family). In northern Germany it can also derive from the ...
,
limb girdle,
congenital,
facioscapulohumeral,
myotonic,
oculopharyngeal,
distal, and
Emery–Dreifuss muscular dystrophies.
[H.R. 717--107th Congress (2001)](_blank)
MD-CARE Act, GovTrack.us (database of federal legislation), (accessed July 29, 2007)[Public Law 107-84](_blank)
PDF as retrieved from NIH
The National Institutes of Health, commonly referred to as NIH (with each letter pronounced individually), is the primary agency of the United States government responsible for biomedical and public health research. It was founded in the late ...
website
MDCC
The act established a
Federal Advisory Committee The Federal Advisory Committee Act (FACA) (), is a United States federal law which governs the behavior of federal advisory committees. In particular, it has special emphasis on open meetings, chartering, public involvement, and reporting. The U.S. ...
called the Muscular Dystrophy Coordinating Committee (MDCC), which is composed of no more than 15 members to coordinate the activities across the National Institutes and with other Federal health programs and activities relating to the various forms of muscular dystrophy. By law the committee's composition is 2/3s governmental agencies and 1/3 public membership, including a broad cross section of persons affected with muscular dystrophies including parents or legal guardians, affected individuals, researchers, and clinicians. Public members appointed serve for a term of 3 years, and may serve for an unlimited number of terms if reappointed.
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 January 200
MDCC Action Plan for the Muscular Dystrophies 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.
NIH
The National Institutes of Health, commonly referred to as NIH (with each letter pronounced individually), is the primary agency of the United States government responsible for biomedical and public health research. It was founded in the late ...
, Last updated May 18, 2007
Amendments
On July 28, 2014, the
United States House of Representatives
The United States House of Representatives, often referred to as the House of Representatives, the U.S. House, or simply the House, is the lower chamber of the United States Congress, with the Senate being the upper chamber. Together they ...
voted to pass the
Paul D. Wellstone Muscular Dystrophy Community Assistance, Research and Education Amendments of 2013 (H.R. 594; 113th Congress), a bill that would amend the
Public Health Service Act to revise the
muscular dystrophy research program of the
National Institutes of Health
The National Institutes of Health, commonly referred to as NIH (with each letter pronounced individually), is the primary agency of the United States government responsible for biomedical and public health research. It was founded in the late ...
(NIH).
The bill would amend the Muscular Dystrophy Community Assistance Research and Education Amendments of 2001 to authorize the Secretary of Health and Human Services to: (1) update and disseminate widely existing Duchenne-Becker muscular dystrophy care considerations for pediatric patients, and (2) develop and disseminate widely Duchenne-Becker muscular dystrophy considerations for adult patients and acute care considerations for all muscular dystrophy populations.
References
{{Muscular Dystrophy
United States federal government administration legislation
Acts of the 107th United States Congress
Muscular dystrophy