Centers of Excellence on Rare Kidney Disease Research in the National Institute of Diabetes and Digestive and Kidney Diseases

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: 426A. Centers of Excellence on Rare Kidney Disease Research in the National Institute of Diabetes and Digestive and Kidney Diseases (a) Cooperative agreements and grants (1) In general 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 of Excellence on Rare Kidney Disease Research (referred to in this section as Centers of Excellence). (2) Purposes of centers The purposes of the Centers of Excellence funded pursuant to paragraph (1) shall be— (A) to conduct research on the causes, etiology, symptoms, diagnosis, progression, and treatment of rare kidney diseases, including glomerular diseases; (B) to increase public awareness of rare kidney diseases, particularly in rural and underserved communities; and (C) to develop resources for clinical research into, training in, and demonstration of diagnostic, prevention, control, and treatment methods for, rare kidney diseases. (3) Policies 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. (b) Coordination with other institutes 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. (c) Use of funds An entity that enters into a cooperative agreement or receives a grant under subsection (a) may use funds received through such agreement or grant— (1) to cover patient care costs required to conduct research described in subsection (a)(2)(A); (2) to provide, for the purpose described in subsection (a)(2)(B)— (A) clinical training and continuing education for health professionals and related personnel with respect to rare kidney diseases; and (B) information programs for the public, with respect to rare kidney diseases; and (3) to provide, for the purpose described in subsection (a)(2)(B)— (A) for education of members of the public, particularly through outreach to rural and underserved communities, on the diagnosis (including through routine urinalysis and through genetic testing), prevention, control, and treatment of rare kidney diseases; and (B) for 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. (d) Research funded Research conducted using funds awarded through a cooperative agreement or grant under this section— (1) shall include study of genotype-phenotype relation to disease progression; and (2) with respect the populations studied in such research, may not include any consideration of quality-adjusted life years or disability adjusted life years, or other similar mechanisms that discriminate against individuals with disabilities in value and cost-effectiveness assessments. (e) Period of support; additional periods 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— (1) 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 (2) such group has recommended to the Director of the Institute that such period should be extended. (f) Authorization of appropriations To carry out this section, there are authorized to be appropriated $6,000,000 for each of fiscal years 2026 through 2030..