Updated MD-CARE Act Receives Final Congressional Approval
To: MEDICAL EDITORS
Contact: Bob Mackle, Vice President, Public Information of Muscular Dystrophy Association, +1-520-529-5317, firstname.lastname@example.org
TUCSON, Ariz., Sept. 27 /PRNewswire-USNewswire/ — The Paul D. Wellstone Muscular Dystrophy Community Assistance, Research and Education (MD-CARE) Amendments of 2008 received final Congressional approval today. It now goes to President Bush, who is expected to sign it.
The approved legislation — which reauthorizes and updates the MD- CARE Act of 2001 — will escalate research and the development of treatments for several forms of muscular dystrophy.
Dr. R. Rodney Howell, the Muscular Dystrophy Association’s chairman of the board, was pleased with the Congressional action, noting, “MDA is proud to stand with Congress and thousands of MD advocates to take this significant step toward increased clinical trials and therapies for muscular dystrophy. The MD-CARE Act’s newly reauthorized commitment to funding research and clinical excellence ensures continued progress towards a cure.”
Howell gratefully acknowledged the efforts and commitment of the legislators who sponsored the amended MD-CARE Act: Congressmen Eliot Engel (D-NY) and Michael Burgess (R-TX) [H.R. 5265] and Senators Amy Klobuchar (D-MN) and Johnny Isakson (R-GA) [S. 2618].
The MD-CARE Act of 2001 required that the National Institutes of Health (NIH) designate muscular dystrophy Research Centers of Excellence to work independently and collaboratively on clinical research projects dealing with muscular dystrophy.
MDA aided creation of the centers by contributing $1.5 million to each of the first three.
The original MD-CARE Act also mandated creation of a Muscular Dystrophy Coordinating Committee to expand and intensify research efforts, established an epidemiological data collection system under the auspices of the federal Centers for Disease Control, and piloted a national care considerations project for the treatment of Duchenne and Becker muscular dystrophies.
The newly passed MD-CARE Amendments include several new provisions:
— Expand the NIH Institutes involved to include the National Heart, Lung and Blood Institute.
— Officially name the centers of excellence, the Paul D. Wellstone Muscular Dystrophy Cooperative Research Centers, after the late Senator who served as a champion for the MD community.
— The epidemiological data system may be expanded to include health outcomes and reflect patients’ changing conditions over time.
— The development and broad dissemination of care considerations for the muscular dystrophies.
— As promising therapies for muscular dystrophies are identified, they are eligible to be processed through an enhanced clinical infrastructure that “fast tracks” research findings into viable therapies for patients.
MDA is a voluntary health agency supporting programs of worldwide research, comprehensive services and far-reaching professional and public health education for muscular dystrophy and related diseases. The Association’s programs are funded almost entirely by individual private contributors.
SOURCE Muscular Dystrophy Association
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