Sec. 2. NIH expansion, intensification, and coordination of research on rare diseases health equity
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Part B of title IV of the Public Health Service Act ( 42 U.S.C. 284 et seq. ) is amended by adding at the end the following: The Director of NIH shall expand, intensify, and coordinate research and other activities of the National Institutes of Health with respect to rare diseases health equity. With respect to amounts appropriated to carry out this section for a fiscal year, the Director of NIH shall allocate the amounts among the national research institutes that are carrying out paragraph (1).
The Secretary shall maintain a coordinating committee with respect to rare diseases health equity (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 rare diseases health equity. The Coordinating Committee shall be composed of— the directors (or their designees) of each of the national research institutes involved in research with respect to rare diseases and minority health or health equity; and representatives of all other Federal departments and agencies whose programs involve health functions or responsibilities relevant to such rare diseases, including the Centers for Disease Control and Prevention and the Food and Drug Administration.
With respect to rare diseases health equity, 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 other relevant agencies. The Chair of the Coordinating Committee shall be directly responsible to the Director of NIH. Not later than 1 year after the date of the enactment of this section, the Coordinating Committee shall develop a plan for conducting and supporting research and education on rare diseases health equity, and rare diseases or conditions in minority populations, through the national research institutes.
The Coordinating Committee shall periodically review and revise the plan. The plan shall— provide for a broad range of research and education activities relating to biomedical, psychosocial, and rehabilitative issues, including studies of the disproportionate impact of such diseases or conditions on minority populations; identify priorities among the programs and activities of the National Institutes of Health regarding such diseases or conditions; and reflect input from a broad range of scientists, patients, and advocacy groups.
The plan under paragraph
(1)shall, with respect to rare diseases or conditions in minority populations, provide for the following as appropriate: Research to determine the reasons underlying the incidence and prevalence of the diseases or conditions, including among subpopulations. Basic research concerning the etiology and causes of the diseases or conditions. Epidemiological studies to address the frequency and natural history of the diseases or conditions, including any differences among the sexes and among racial and ethnic groups. The development of improved screening techniques. Clinical research for the development and evaluation of new treatments, including new biological agents. Information and education programs for health care professionals and the public. The Director of NIH shall ensure that programs and activities of the National Institutes of Health regarding rare diseases or conditions in minority populations are implemented in accordance with the plan under paragraph (1). In this section: The term minority has the meaning given such term in section 464z–3. The term rare disease or condition has the meaning given such term in section 526 of the Federal Food, Drug, and Cosmetic Act ( 21 U.S.C. 360bb ). .
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Sec. 2
NIH expansion, intensification, and coordination of research on rare diseases health equity
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