42 U.S. Code § 283g - Muscular dystrophy; initiative through Director of National Institutes of Health
The Director of NIH, in coordination with the Directors of the National Institute of Neurological Disorders and Stroke, the National Institute of Arthritis and Musculoskeletal and Skin Diseases, the Eunice Kennedy Shriver National Institute of Child Health and Human Development, the National Heart, Lung, and Blood Institute, and the other national research institutes as appropriate, shall expand and intensify programs of such Institutes with respect to research and related activities concerning various forms of muscular dystrophy, including Duchenne, Becker, congenital muscular dystrophy, limb-girdle muscular dystrophy, myotonic, facioscapulohumeral muscular dystrophy (referred to in this section as “FSHD”) and other forms of muscular dystrophy.
The Director of NIH shall award grants and contracts under subsection (a)(1) to public or nonprofit private entities to pay all or part of the cost of planning, establishing, improving, and providing basic operating support for centers of excellence regarding research on various forms of muscular dystrophy. Such centers of excellence shall be known as the “Paul D. Wellstone Muscular Dystrophy Cooperative Research Centers”.
Each center under paragraph (1) shall supplement but not replace the establishment of a comprehensive research portfolio in all the muscular dystrophies. As a whole, the centers shall conduct basic and clinical research in all forms of muscular dystrophy including early detection, diagnosis, prevention, and treatment, including the fields of muscle biology, genetics, noninvasive imaging, cardiac and pulmonary function, and pharmacological and other therapies.
The Director of NIH shall, as appropriate, provide for the coordination of information among centers under paragraph (1) and ensure regular communication and sharing of data between such centers.
Support for a center established under paragraph (1) may be provided under this section for a period of not to exceed 5 years. Such period may be extended for 1 or more additional periods not exceeding 5 years if the operations of such center have been reviewed by an appropriate technical and scientific peer review group established by the Director of NIH and if such group has recommended to the Director that such period should be extended.
The Director of NIH shall provide for a program under subsection (a)(1) under which samples of tissues and genetic materials that are of use in research on muscular dystrophy are donated, collected, preserved, and made available for such research. The program shall be carried out in accordance with accepted scientific and medical standards for the donation, collection, and preservation of such samples.
The Secretary shall establish the Muscular Dystrophy Coordinating Committee (referred to in this section as the “Coordinating Committee”) to coordinate activities across the National Institutes and with other Federal health programs and activities relating to the various forms of muscular dystrophy.
With respect to muscular dystrophy, the Chair of the Coordinating Committee shall serve as the principal advisor to the Secretary, the Assistant Secretary for Health, and the Director of NIH, and shall provide advice to the Director of the Centers for Disease Control and Prevention, the Commissioner of Food and Drugs, and to the heads of other relevant agencies. The Coordinating Committee shall select the Chair for a term not to exceed 2 years.
The Chair of the Committee shall be appointed by and be directly responsible to the Secretary.
The Secretary shall, under subsection (a)(1), provide for a means through which the public can obtain information on the existing and planned programs and activities of the Department of Health and Human Services with respect to various forms of muscular dystrophy and through which the Secretary can receive comments from the public regarding such programs and activities.
The Coordinating Committee may evaluate the potential need to enhance the clinical research infrastructure required to test emerging therapies for the various forms of muscular dystrophy by prioritizing the achievement of the goals related to this topic in the plan under subsection (e)(1).
 See References in Text note below.
 So in original. Probably should be capitalized.
Section 6 of the MD–CARE Act, referred to in subsec. (a)(2), is section 6 of Pub. L. 107–84, which was formerly set out as a note under section 247b–18 of this title and does not relate to establishment of a coordinating committee. However, subsec. (d) of this section contains provisions relating to the establishment of the Muscular Dystrophy Coordinating Committee.
A prior section 283g, act July 1, 1944, ch. 373, title IV, § 404E, as added Pub. L. 103–43, title II, § 209, June 10, 1993, 107 Stat. 149, related to Office of Alternative Medicine, prior to repeal by Pub. L. 105–277, div. A, § 101(f) [title VI, § 601(1)], Oct. 21, 1998, 112 Stat. 2681–337, 2681–387.
2014—Subsec. (a)(1). Pub. L. 113–166, § 2(1), substituted “Musculoskeletal” for “Muscoskeletal” and inserted “Becker, congenital muscular dystrophy, limb-girdle muscular dystrophy,” after “Duchenne,”.
Subsec. (b)(2). Pub. L. 113–166, § 2(2)(A), substituted “cardiac and pulmonary function, and pharmacological” for “genetics, pharmacological”.
Subsec. (b)(3). Pub. L. 113–166, § 2(2)(B), inserted “and sharing of data” after “regular communication”.
Subsec. (d)(2). Pub. L. 113–166, § 2(3)(A)(i), substituted “18” for “15” in introductory provisions.
Subsec. (d)(2)(A). Pub. L. 113–166, § 2(3)(A)(ii), substituted “, the Food and Drug Administration, and the Administration for Community Living” for “and the Food and Drug Administration” and “including the Department of Education and the Social Security Administration” for “such as the Department of Education” and inserted “and adults” after “children”.
Subsec. (d)(4)(B). Pub. L. 113–166, § 2(3)(B), inserted “, but shall meet no fewer than two times per calendar year” before period at end.
Subsec. (e)(1). Pub. L. 113–166, § 2(4)(A)(i), substituted “through the agencies represented on the Coordinating Committee pursuant to subsection (d)(2)(A)” for “through the national research institutes” in introductory provisions.
Subsec. (e)(1)(A). Pub. L. 113–166, § 2(4)(A)(ii), inserted “public services,” after “psychosocial,” and “, studies to demonstrate the cost-effectiveness of providing independent living resources and support to patients with various forms of muscular dystrophy, and studies to determine optimal clinical care interventions for adults with various forms of muscular dystrophy” after “including studies of the impact of such diseases in rural and underserved communities”.
Subsec. (e)(2)(D). Pub. L. 113–166, § 2(4)(B), inserted “and new clinical interventions to improve the health of those with muscular dystrophy” after “including new biological agents”.
2008—Subsec. (a)(1). Pub. L. 110–361, § 2(b)(1), inserted “the National Heart, Lung, and Blood Institute,” after “the Eunice Kennedy Shriver National Institute of Child Health and Human Development,”.
Subsec. (b)(1). Pub. L. 110–361, § 2(b)(2), inserted at end “Such centers of excellence shall be known as the ‘Paul D. Wellstone Muscular Dystrophy Cooperative Research Centers’.”
Subsec. (f). Pub. L. 110–361, § 2(a), redesignated subsec. (g) as (f) and struck out former subsec. (f) which related to reports.
Subsec. (g). Pub. L. 110–361, § 2(a), (b)(3), added subsec. (g) and redesignated former subsec. (g) as (f).
2007—Pub. L. 109–482, § 104(b)(1)(A)(ii), which directed amendment of subsec. (b) by striking subsec. (f) and redesignating subsec. (g) as (f), could not literally be executed and was not executed in view of amendments by Pub. L. 110–361. See 2008 Amendment notes above.
Subsec. (a)(1). Pub. L. 110–154 substituted “Eunice Kennedy Shriver National Institute of Child Health and Human Development” for “National Institute of Child Health and Human Development”.
Subsec. (b)(3). Pub. L. 109–482, § 104(b)(1)(A)(i), amended heading and text of par. (3) generally. Text read as follows: “The Director of NIH—
Subsec. (h). Pub. L. 109–482, § 103(b)(4), struck out heading and text of subsec. (h). Text read as follows: “For the purpose of carrying out this section, there are authorized to be appropriated such sums as may be necessary for each of fiscal years 2002 through 2006. The authorization of appropriations established in the preceding sentence is in addition to any other authorization of appropriations that is available for conducting or supporting through the National Institutes of Health research and other activities with respect to muscular dystrophy.”
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