42 U.S.C. § 283g — Muscular dystrophy; initiative through Director of National Institutes of Health

(a) Expansion, intensification, and coordination of activities: The Director of NIH must work with the directors of several institutes — including those focused on neurological disorders, musculoskeletal and skin diseases, child health, and heart, lung, and blood — to expand and intensify research on all forms of muscular dystrophy, including Duchenne, Becker, congenital, limb-girdle, myotonic, and facioscapulohumeral (called "FSHD") muscular dystrophy. These directors must coordinate their programs together and consult with the Muscular Dystrophy Interagency Coordinating Committee created under the MD–CARE Act. Each year, the Director of NIH divides the money appropriated for this work among the relevant institutes. (b) Centers of excellence: The Director of NIH must award grants and contracts to public or nonprofit private entities to help pay for planning, setting up, improving, and running "centers of excellence" for muscular dystrophy research. These are called the Paul D. Wellstone Muscular Dystrophy Cooperative Research Centers. Each center adds to — but does not replace — a full research effort covering all forms of muscular dystrophy, including early detection, diagnosis, prevention, and treatment, and covering muscle biology, genetics, imaging that doesn't require surgery, heart and lung function, and drug and other therapies. The Director must help coordinate information between centers and make sure they communicate and share data regularly. Each center can be a single institution or a group of institutions working together, following rules the Director sets. Support for a center can last up to 5 years, and can be renewed for more 5-year periods if a peer review group evaluates the center and recommends the extension. (c) Facilitation of research: The Director of NIH must run a program where tissue and genetic material samples useful for muscular dystrophy research are donated, collected, preserved, and made available to researchers, following accepted scientific and medical standards. (d) Coordinating Committee: The Secretary must set up the Muscular Dystrophy Coordinating Committee to coordinate work across NIH's institutes and with other federal health programs. The Committee has up to 18 members appointed by the Secretary. Two-thirds of them represent government agencies — the directors (or their designees) of the relevant national research institutes, plus representatives from agencies like the CDC, the Health Resources and Services Administration, the FDA, the Administration for Community Living, the Department of Education, and the Social Security Administration. The other third are public members — a broad mix of people affected by muscular dystrophy, including parents, guardians, patients, researchers, and clinicians, each serving 3-year terms that can be renewed without limit. The Committee's Chair acts as the main advisor to the Secretary, the Assistant Secretary for Health, and the Director of NIH on muscular dystrophy, and also advises the heads of the CDC, FDA, and other relevant agencies. The Committee picks its own Chair for a term of up to 2 years, but the Secretary formally appoints the Chair, who answers directly to the Secretary. The Department of Health and Human Services must give the Committee administrative support, and the Committee must meet at least twice a year, as the Secretary decides in consultation with the Chair. (e) Plan for HHS activities: Within one year of December 18, 2001, the Coordinating Committee had to create a plan — and must keep reviewing and updating it — for how the agencies on the Committee conduct and support muscular dystrophy research and education. The plan must cover a wide range of research and education topics, including biomedical, psychological and social, public-service, and rehabilitation issues; it must study how these diseases affect rural and underserved communities; it must study the cost-effectiveness of independent-living support; and it must study what clinical care works best for adults with muscular dystrophy. The plan must set priorities for NIH's programs on these diseases, and must reflect input from a broad range of scientists, patients, and advocacy groups. For each form of muscular dystrophy, the plan must, where appropriate, address: research into why the disease occurs and how common it is; basic research into its causes and genetic links; better screening methods; research to develop and test new treatments, including new biological drugs and clinical approaches; and information and education programs for health professionals and the public. (f) Public input: The Secretary must set up a way for the public to learn about HHS's existing and planned muscular dystrophy programs, and a way for the public to send comments about those programs to the Secretary. (g) Clinical research: The Coordinating Committee may look at whether the clinical research infrastructure needed to test new muscular dystrophy therapies should be strengthened, by making that goal a priority in the plan required under subsection (e).