Title 42 › Chapter CHAPTER 6A— - PUBLIC HEALTH SERVICE › Subchapter SUBCHAPTER III— - NATIONAL RESEARCH INSTITUTES › Part Part A— - National Institutes of Health › § 283g
The Director of the National Institutes of Health must increase and coordinate research on all forms of muscular dystrophy. The Director will work with other NIH institute leaders (including the institutes that study nerve, muscle and bone, child health, and heart and lung conditions) and share money among them. The law names several types of muscular dystrophy to study, such as Duchenne, Becker, congenital, limb‑girdle, myotonic, and facioscapulohumeral, and other types too. NIH must give grants and contracts to public or nonprofit groups to create Paul D. Wellstone Muscular Dystrophy Cooperative Research Centers. These centers will add to wider research efforts and do basic and clinical work across all muscular dystrophies. They will study early detection, diagnosis, prevention, and treatment, and areas like muscle biology, genetics, imaging, heart and lung function, and drug or other therapies. Centers must share data and communicate, can be one institution or a group of institutions, and can get up to 5 years of support at a time, renewable for more 5‑year periods if peer review approves. NIH must also run a program to collect and store tissue and genetic samples for research under accepted medical standards. The Secretary of Health and Human Services must set up a Muscular Dystrophy Coordinating Committee of up to 18 members. Two‑thirds will be government officials (including NIH institute directors and agencies like CDC, FDA, and Social Security), and one‑third will be public members (patients, parents, researchers, and clinicians). The committee’s chair is chosen for up to 2 years and advises top health officials. The committee gets HHS support, meets at least twice a year, and within 1 year after December 18, 2001 must make and keep updating a plan for research and education. The plan must set priorities, cover many research and public‑health topics (including effects in rural and underserved areas and studies of care and cost‑effectiveness), and include research, screening, treatments, and education. The public must have a way to get information and give comments, and the committee may look into strengthening clinical research sites to test new therapies.
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The Public Health and Welfare — Source: USLM XML via OLRC
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42 U.S.C. § 283g
Title 42 — The Public Health and Welfare
Last Updated
Apr 6, 2026
Release point: 119-73