Title 42 › CHAPTER 6A — PUBLIC HEALTH SERVICE › SUBCHAPTER III — NATIONAL RESEARCH INSTITUTES › Part A — National Institutes of Health › § 283g
The Director of the National Institutes of Health must grow and strengthen research on all forms of muscular dystrophy. The Director must work with the listed NIH institutes and other research institutes as needed, share money among them each year, and coordinate their work with the Muscular Dystrophy Interagency Coordinating Committee. The NIH will fund public and nonprofit groups to create “Paul D. Wellstone Muscular Dystrophy Cooperative Research Centers.” These centers will plan and run research on many types of muscular dystrophy, doing both basic lab work and clinical studies on things like muscle biology, genetics, imaging, heart and lung health, and new treatments. The centers must share information and can be at one institution or a group of institutions. Funding for a center is up to 5 years and can be renewed in additional blocks of up to 5 years after a scientific review. NIH must also run a program to collect, store, and share tissue and genetic samples for research using accepted scientific and medical practices. The Secretary of Health and Human Services must set up a Muscular Dystrophy Coordinating Committee with no more than 18 members. Two-thirds will be government representatives (including the NIH institute directors and agencies like CDC, HRSA, FDA, ACL, Education, and Social Security). One-third will be public members, such as patients, parents, researchers, and doctors. Public members serve 3-year terms and may be reappointed. The Committee chooses a Chair (appointed by the Secretary) for up to 2 years to advise HHS leaders and relevant agencies. The Committee gets HHS support and must meet at least twice a year. Not later than 1 year after December 18, 2001, the Committee must write and regularly update a plan for research and education. The plan must set priorities and cover studies on how common the diseases are, causes and genetics, better screening, new treatments, and education for health professionals and the public. The Secretary must provide a way for the public to get information and offer comments. The Committee may also assess the need to improve 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
Sep 23, 2026
Release point: 119-110