Integrating Patient Priorities with Science by Community Engagement in the Kidney Precision Medicine Project.

Autor:	Tuttle KR; Kidney Research Institute and Division of Nephrology, University of Washington, Seattle, Washington., Knight R; Kidney Precision Medicine Project Patient Partner, Washington, DC.; American Association of Kidney Patients, Tampa, Florida., Appelbaum PS; Department of Psychiatry, Columbia University Irving Medical Center, New York, New York., Arora T; Division of Nephrology, Yale University, New Haven, Connecticut., Bansal S; Division of Nephrology, University of Texas Health Science Center San Antonio, San Antonio, Texas., Bebiak J; Kidney Precision Medicine Project Patient Partner, Indianapolis, Indiana., Brown K; Kidney Precision Medicine Project Patient Partner, Post Falls, Idaho., Campbell C; Kidney Precision Medicine Project Patient Partner, Dallas, Texas., Cooperman L; Kidney Precision Medicine Project Patient Partner, Indianapolis, Indiana., Corona-Villalobos CP; Kidney Precision Medicine Project Patient Partner, Post Falls, Idaho., Dighe A; Kidney Research Institute and Division of Nephrology, University of Washington, Seattle, Washington., de Boer IH; Kidney Research Institute and Division of Nephrology, University of Washington, Seattle, Washington., Hall DE; Kidney Precision Medicine Project Patient Partner, Dallas, Texas., Jefferson N; Kidney Precision Medicine Project Patient Partner, Dallas, Texas., Jolly S; Department of Medicine, Cleveland Clinic, Cleveland, Ohio., Kermani A; Division of Nephrology, Cleveland Clinic, Cleveland, Ohio., Lee SC; Department of Population and Data Sciences, University of Texas Southwestern Medical School, Dallas, Texas., Mehl K; Division of Nephrology, Columbia University Irving Medical Center, New York, New York., Murugan R; Division of Critical Care Medicine, University of Pittsburgh School of Medicine, Pittsburgh, Pennsylvania., Roberts GV; Kidney Research Institute and Division of Nephrology, University of Washington, Seattle, Washington.; Kidney Precision Medicine Project Patient Partner, Seattle, Washington., Rosas SE; Division of Nephrology, Johns Hopkins University, School of Medicine, Baltimore, Maryland., Himmelfarb J; Kidney Research Institute and Division of Nephrology, University of Washington, Seattle, Washington., Miller RT; Department of Surgery, University of Pittsburgh School of Medicine, Pittsburgh, Pennsylvania.; Division of Nephrology, University of Texas Southwestern Medical School, Dallas, Texas.
Jazyk:	angličtina
Zdroj:	Clinical journal of the American Society of Nephrology : CJASN [Clin J Am Soc Nephrol] 2021 Apr 07; Vol. 16 (4), pp. 660-668. Date of Electronic Publication: 2020 Nov 30.
DOI:	10.2215/CJN.10270620
Abstrakt:	The Kidney Precision Medicine Project (KPMP) is a multisite study designed to improve understanding of CKD attributed to diabetes or hypertension and AKI by performing protocol-driven kidney biopsies. Study participants and their kidney tissue samples undergo state-of-the-art deep phenotyping using advanced molecular, imaging, and data analytical methods. Few patients participate in research design or concepts for discovery science. A major goal of the KPMP is to include patients as equal partners to inform the research for clinically relevant benefit. The purpose of this report is to describe patient and community engagement and the value they bring to the KPMP. Patients with CKD and AKI and clinicians from the study sites are members of the Community Engagement Committee, with representation on other KPMP committees. They participate in KPMP deliberations to address scientific, clinical, logistic, analytic, ethical, and community engagement issues. The Community Engagement Committee guides KPMP research priorities from perspectives of patients and clinicians. Patients led development of essential study components, including the informed consent process, no-fault harm insurance coverage, the ethics statement, return of results plan, a "Patient Primer" for scientists and the public, and Community Advisory Boards. As members across other KPMP committees, the Community Engagement Committee assures that the science is developed and conducted in a manner relevant to study participants and the clinical community. Patients have guided the KPMP to produce research aligned with their priorities. The Community Engagement Committee partnership has set new benchmarks for patient leadership in precision medicine research. (Copyright © 2021 by the American Society of Nephrology.)
Databáze:	MEDLINE
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