Kidney disease research in minority populations

(a) In general (1) Research and training centers Section 431(c)(3) of the Public Health Service Act (42 U.S.C. 285c–5(c)(3)) is amended— (A) in subparagraph (B), by striking and at the end; (B) in subparagraph (C), by striking and at the end; and (C) by adding at the end the following: (D) improving data science through improvement in bioinformatics, data integration, and data sharing; (E) defining the chronic kidney disease mechanism and identifying new therapeutic targets for chronic kidney disease using specific tools, including mapping the genetic architecture of kidney function and disease and translating genetic maps to disease-causing genes and mechanisms, especially among minority populations; (F) improving models of human disease including better humanized animal models, improved reproducibility, and functional characterization of kidney organoids, and accelerating the development of in vivo imaging technologies; and (G) developing cell-specific drug delivery systems and gene editing, including targeted systems for the delivery of therapeutic compounds to specific kidney compartments or cell types and accelerating the implementation of gene editing and gene therapy for the treatment of kidney diseases in vivo; and. (2) Inclusion of minority participants In conducting and supporting research described in the amendment made by paragraph (1), the Director of the National Institutes of Health shall work with the Director of the National Institute on Minority Health and Health Disparities to improve the number of minority participants as study subjects in clinical trials. Such work may include— (A) developing and sustaining clinical trial consortia that can recruit patients with chronic kidney disease to ensure adequate capacity for assessment of kidney outcomes and increase the enrollment of underrepresented populations; (B) encouraging the use of novel designs in clinical trials to enhance the recruitment and retention of underrepresented populations which will enhance the generalizability of study findings; (C) supporting outreach initiatives that incorporate acknowledgment of both historical and current grounds for participation reluctance, and that prioritize demonstrating trustworthiness, in order to enhance the ability to promote and effectively convey the benefits of clinical research participation; (D) completing clinical trials that test interventions to improve patient quality of life and address patient-reported outcomes; and (E) encouraging inclusion of persons with chronic kidney disease in clinical trials of treatments for nonkidney diseases. (b) Report; comprehensive plan Section 429 of the Public Health Services Act (42 U.S.C. 285c–3) is amended by adding at the end the following: (c) Report by kidney, urologic, and hematologic diseases coordinating committee (1) In general The Kidney, Urologic, and Hematologic Diseases Coordinating Committee, in coordination with the Chronic Kidney Disease Initiative at the Centers for Disease Control and Prevention, shall— (A) prepare and submit to the Congress, not later than 6 months after the date of enactment of this subsection, a report on Federal research and public health activities with respect to kidney disease in minority populations; and (B) develop and submit to the Congress, the Secretary, the Director of the National Institutes of Health, and the Advisory Board established under section 430 for the diseases for which the Committee was established, not later than 1 year after the date of enactment of this subsection, an effective and comprehensive Federal plan (including all appropriate Federal health programs) to address kidney disease in minority populations. (2) Contents The report under paragraph (1)(A) shall at minimum address each of the following: (A) Research on kidney disease in minority populations, including such research on— (i) genetic, behavioral, and environmental factors; (ii) prevention and complications among individuals within these populations who have already developed kidney disease; (iii) the delivery of evidenced-based care for all chronic kidney disease stages, especially in underrepresented and underserved populations; (iv) expanding support for a root-cause analysis approach to disparities, including causes, detection, and management of chronic kidney disease for underserved populations; (v) developing research teams that engage with community organizations to develop and implement interventions which halt or delay development and progression of chronic kidney disease; and (vi) continued support of observational studies of kidney disease measures and outcomes. (B) Surveillance and data collection on kidney disease in minority populations, including with respect to— (i) efforts to better determine the prevalence of kidney disease among Asian-American, Native Hawaiian, and Pacific Islander subgroups; and (ii) efforts to coordinate data collection on the American Indian population. (C) Community-based interventions to address kidney disease targeting minority populations, including— (i) the evidence bases for such interventions; (ii) the cultural appropriateness of such interventions; and (iii) efforts to educate the public on the causes and consequences of kidney disease. (D) Education and training programs for health professionals (including community health workers) on the prevention and management of kidney disease and its related complications that are supported by the Health Resources and Services Administration, including such programs supported by the Bureau of Health Workforce, the Bureau of Primary Health Care, and the Health Systems Bureau. This shall include— (i) identification of effective strategies to increase implementation of proven therapies to slow chronic kidney disease incidence and progression, especially in high-risk underrepresented populations; and (ii) identification of effective practice improvement strategies in large and small health systems to reduce chronic kidney disease incidence and progression..