View all text of Part A [§ 281 - § 283r]
§ 283g. Muscular dystrophy; initiative through Director of National Institutes of Health
(a) Expansion, intensification, and coordination of activities
(1) In general
(2) Coordination
(3) Allocations by Director of NIH
(b) Centers of excellence
(1) In general
(2) Research
(3) Coordination of centers
(4) Organization of centers
(5) Duration of support
(c) Facilitation of research
(d) Coordinating Committee
(1) In general
(2) Composition
The Coordinating Committee shall consist of not more than 18 members to be appointed by the Secretary, of which—
(A) ⅔ of such members shall represent governmental agencies, including the directors or their designees of each of the national research institutes involved in research with respect to muscular dystrophy and representatives of all other Federal departments and agencies whose programs involve health functions or responsibilities relevant to such diseases, including the Centers for Disease Control and Prevention, the Health Resources and Services Administration, the Food and Drug Administration, and the Administration for Community Living and representatives of other governmental agencies that serve children and adults with muscular dystrophy, including the Department of Education and the Social Security Administration; and
(B) ⅓ of such members shall be public members, including a broad cross section of persons affected with muscular dystrophies including parents or legal guardians, affected individuals, researchers, and clinicians.
Members appointed under subparagraph (B) shall serve for a term of 3 years, and may serve for an unlimited number of terms if reappointed.
(3) Chair
(A) In general
(B) Appointment
(4) Administrative support; terms of service; other provisions
The following shall apply with respect to the Coordinating Committee:
(A) The Coordinating Committee shall receive necessary and appropriate administrative support from the Department of Health and Human Services.
(B) The Coordinating Committee shall meet as appropriate as determined by the Secretary, in consultation with the chair,2
2 So in original. Probably should be capitalized.
but shall meet no fewer than two times per calendar year.(e) Plan for HHS activities
(1) In general
Not later than 1 year after December 18, 2001, the Coordinating Committee shall develop a plan for conducting and supporting research and education on muscular dystrophy through the agencies represented on the Coordinating Committee pursuant to subsection (d)(2)(A) and shall periodically review and revise the plan. The plan shall—
(A) provide for a broad range of research and education activities relating to biomedical, epidemiological, psychosocial, public services, and rehabilitative issues, including studies of the impact of such diseases in rural and underserved communities, 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;
(B) identify priorities among the programs and activities of the National Institutes of Health regarding such diseases; and
(C) reflect input from a broad range of scientists, patients, and advocacy groups.
(2) Certain elements of plan
(A) Research to determine the reasons underlying the incidence and prevalence of various forms of muscular dystrophy.
(B) Basic research concerning the etiology and genetic links of the disease and potential causes of mutations.
(C) The development of improved screening techniques.
(D) Basic and clinical research for the development and evaluation of new treatments, including new biological agents and new clinical interventions to improve the health of those with muscular dystrophy.
(E) Information and education programs for health care professionals and the public.
(f) Public input
(g) Clinical research
(July 1, 1944, ch. 373, title IV, § 404E, as added Pub. L. 107–84, § 3, Dec. 18, 2001, 115 Stat. 824; amended Pub. L. 109–482, title I, §§ 103(b)(4), 104(b)(1)(A), Jan. 15, 2007, 120 Stat. 3687, 3692; Pub. L. 110–154, § 1(b)(3), Dec. 21, 2007, 121 Stat. 1827; Pub. L. 110–361, § 2, Oct. 8, 2008, 122 Stat. 4010; Pub. L. 113–166, § 2, Sept. 26, 2014, 128 Stat. 1879.)