Sec. 101. NIDDK Centers on Rare Kidney Disease Research
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Subpart 3 of part C of title IV of the Public Health Service Act ( 42 U.S.C. 281 et seq. ) is amended by inserting after section 426 ( 42 U.S.C. 285c ) the following new section: The Director of the Institute may enter into cooperative agreements with, and make grants to, public and private nonprofit entities to pay all or part of the cost of planning, establishing, or strengthening, and providing basic operating support for, regional centers of excellence for rare kidney diseases, including primary glomerular disease. Such centers of excellence shall be known as NIDDK Centers on Rare Kidney Disease Research. The purposes of the centers of excellence funded pursuant to paragraph
(1)shall be— to increase public awareness of rare kidney diseases, particularly in communities of color; and to develop resources for clinical research into, training in, and demonstration of diagnostic, prevention, control, and treatment methods for, rare kidney diseases. A cooperative agreement or grant under paragraph
(1)shall be entered into in accordance with policies established by the Director of the National Institutes of Health. The Director of the Institute shall coordinate the activities under this section with similar activities that are related to rare kidney disease and conducted by other national research institutes, centers, and agencies of the National Institutes of Health and by the Food and Drug Administration. Federal payments made under a cooperative agreement or grant under subsection
(a)may be used for— basic operating costs, including such patient care costs as are required for research; clinical training, including training for allied health professionals, continuing education for health professionals and allied health professions personnel, and information programs for the public with respect to rare kidney diseases; clinical research and demonstration programs; education of members of the public, particularly through outreach to communities of color, on the diagnosis (including through routine urinalysis and through genetic testing), prevention, control, and treatment of rare kidney diseases; and education of individuals diagnosed with rare kidney diseases on renal diet and lifestyle, genetic testing, and programs to promote urinalysis, and on mental and emotional health resources for families of rare kidney disease patients. The period of support for a center of excellence under subsection
(a)may not exceed 5 years, except that such period may be extended by the Director of the Institute for additional periods of not more than 5 years for each center if— the operations of such center have been reviewed by an appropriate technical and scientific peer review group established by the Director of the Institute; and such group has recommended to the Director of the Institute that such period should be extended. To carry out this section, there is authorized to be appropriated $4,000,000 for each of fiscal years 2023 through 2027. .
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