Bill summaries are authored by CRS.

Shown Here:
Passed Senate amended (11/15/2001)

Duchenne Muscular Dystrophy Community Assistance, Research and Education Amendments of 2001, or the MD CARE Act - Amends the Public Health Service Act to require the Director of the National Institutes of Health to: (1) expand and intensify programs of the National Institute of Neurological Disorders and Stroke, National Institute of Arthritis and Musculoskeletal and Skin Diseases, and the National Institute of Child Health and Human Development (the National Institutes), and the other national research institutes, as appropriate, with respect to research and related activities concerning the various forms of muscular dystrophy (MD), including Duchenne, myotonic, and facioscapulohumeral MD; (2) award grants or contracts for up to five years to public or nonprofit entities for the cost of establishing, improving, and providing basic operating support for centers of excellence regarding MD research; and (3) provide for donation, collection, and preservation of tissues and genetic materials for such research.

Directs the Secretary of Health and Human Services to establish a Muscular Dystrophy Coordinating Committee to coordinate all Federal MD health programs and activities. Requires such Committee to: (1) develop a plan for conducting and supporting MD research and education through the national research institutes which provides for a broad range of research and education activities relating to biomedical, epidemiological, psychosocial, and rehabilitative issues, including studies of the impact of such diseases in rural and underserved communities; and (2) biennially submit a report to Congress that describes the research, education, and other activities on MD being conducted or supported through the Department of Health and Human Services (HHS). Requires the Secretary to provide for a means through which the public can obtain information and comment on HHS MD programs and activities. Authorizes appropriations for FY 2002 through 2006.

Authorizes the Secretary, through the Centers for Disease Control and Prevention (CDC), to award grants and cooperative agreements to public or nonprofit entities for: (1) the collection, analysis, and reporting of MD data; and (2) carrying out MD epidemiological activities, including collecting and analyzing information on the number, incidence, correlates, and symptoms of cases, through a national surveillance program. Authorizes appropriations.

Directs the Secretary to establish a MD education and information program. Allows the Secretary to provide stipends for health professionals who are enrolled in training programs under such program. Authorizes appropriations.

Requires the Secretary to report annually to the appropriate congressional committees on the implementation of this Act.

Directs the Secretary to: (1) contract with the Institute of Medicine to conduct a study and make recommendations on the impact of, need for, and other issues associated with Centers of Excellence at NIH, including the cost effectiveness of such Centers and alternative research models; and (2) report the results to the Secretary and the appropriate congressional committees.