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      Core Outcome Domains for Trials in Autosomal Dominant Polycystic Kidney Disease: An International Delphi Survey.

      1 , 2 , 3 , 4 , 5 , 6 , 7 , 8 , 9 , 10 , 11 , 3 , 12 , 13 , 14 , 4 , 15 , 16 , 17 , 18 , 19 , 20 , 21 , 3 , 3 , 3 , 3 , 3
      American journal of kidney diseases : the official journal of the National Kidney Foundation
      Elsevier BV
      Autosomal dominant polycystic kidney disease (ADPKD), Delphi, chronic kidney disease (CKD), chronic pain, clinical trial design, core outcome domains, patient priorities, patient-reported outcomes (PROs), qualitative research, quality of life (QoL)

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          Abstract

          Outcomes reported in trials involving patients with autosomal dominant polycystic kidney disease (ADPKD) are heterogeneous and rarely include patient-reported outcomes. We aimed to identify critically important consensus-based core outcome domains to be reported in trials in ADPKD.

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          Author and article information

          Journal
          Am J Kidney Dis
          American journal of kidney diseases : the official journal of the National Kidney Foundation
          Elsevier BV
          1523-6838
          0272-6386
          September 2020
          : 76
          : 3
          Affiliations
          [1 ] Department of Nephrology, Princess Alexandra Hospital, Brisbane, Australia; Australasian Kidney Trials Network, University of Queensland, Brisbane, Australia; Translational Research Institute, Brisbane, Australia. Electronic address: yeoungjee.cho@health.qld.gov.au.
          [2 ] Centre for Transplant and Renal Research, Westmead Institute for Medical Research, The University of Sydney, Sydney, Australia; Department of Renal Medicine, Westmead Hospital, Western Sydney Local Health District, Sydney, Australia.
          [3 ] Sydney School of Public Health, The University of Sydney, Sydney, Australia; Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, Australia.
          [4 ] Department of Internal Medicine, Seoul National University Hospital, Seoul, South Korea.
          [5 ] Department of Nephrology Hypertension, Dialysis, Kidney Transplantation, Tours Hospital, SPHERE - INSERM 1246, University of Tours and Nantes, Tours, France.
          [6 ] Division of Nephrology, Tufts Medical Center, Tufts University School of Medicine, Boston, MA.
          [7 ] Department of Nephrology, Hopital Maisonneuve-Rosemont, Montreal, Canada.
          [8 ] Department of Internal Medicine, Division of Nephrology and Hypertension, University of Kansas Medical Center, Kansas City, KS.
          [9 ] Department of Renal Medicine, Singapore General Hospital, Bukit Merah, Singapore.
          [10 ] Department of Nephrology, University of Colorado, Denver, CO.
          [11 ] Polycystic Kidney Disease International, London, United Kingdom.
          [12 ] College of Medicine and Public Health, Flinders University, Adelaide, Australia.
          [13 ] Academic Nephrology Unit, Department of Infection Immunity & Cardiovascular Disease, University of Sheffield, Sheffield, United Kingdom.
          [14 ] Department of Medicine, The University of Chicago, Chicago, IL.
          [15 ] Polycystic Kidney Disease Foundation of Australia, Roseville, NSW, Australia.
          [16 ] School of Medicine, Fu Jen Catholic University and Fu Jen Catholic University Hospital, Taiwan; Department of Internal Medicine, National Taiwan University Hospital, Taipei City, Taiwan.
          [17 ] Faculty of Medical Sciences, University Medical Center Gronigen, Groningen, the Netherlands.
          [18 ] Department of Nephrology and Hypertension, Mayo Clinic, Rochester, MN.
          [19 ] Division of Nephrology and Division of Genomic Medicine, University of Toronto, Toronto, Canada.
          [20 ] Department of Nephrology, Princess Alexandra Hospital, Brisbane, Australia; Australasian Kidney Trials Network, University of Queensland, Brisbane, Australia; Translational Research Institute, Brisbane, Australia.
          [21 ] Department of Nephrology, Princess Alexandra Hospital, Brisbane, Australia; Australasian Kidney Trials Network, University of Queensland, Brisbane, Australia; Department of Nephrology, Mater Hospital, Brisbane, Australia.
          Article
          S0272-6386(20)30529-1
          10.1053/j.ajkd.2020.01.005
          32359822
          8bb34fc3-409c-4868-8d57-5c04391d89ec
          Copyright © 2020 National Kidney Foundation, Inc. Published by Elsevier Inc. All rights reserved.
          History

          Autosomal dominant polycystic kidney disease (ADPKD),Delphi,chronic kidney disease (CKD),chronic pain,clinical trial design,core outcome domains,patient priorities,patient-reported outcomes (PROs),qualitative research,quality of life (QoL)

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