A Core Outcome Set for Trials in Glomerular Disease
Clinical Journal of the American Society of Nephrology, vol. 17, pp. 53–64
Abstract
Background and objectives Outcomes reported in trials in adults with glomerular disease are often selected with minimal patient input, are heterogeneous, and may not be relevant for clinical decision making. The Standardized Outcomes in Nephrology–Glomerular Disease (SONG-GD) initiative aimed to establish a core outcome set to help ensure that outcomes of critical importance to patients, care partners, and clinicians are consistently reported. Design, setting, participants, and measurements We convened two 1.5-hour workshops in Melbourne, Australia, and Washington, DC, United States. Attendees were identified purposively with 50 patients/care partners and 88 health professionals from 19 countries; 51% were female. Patients and care partners were from the United States, Australia, and Canada, and had experience of a glomerular disease with systemic features ( n =9), kidney-limited nephrotic disease ( n =9), or other kidney-limited glomerular disease ( n =8). Attendees reviewed the results of the SONG-GD Delphi survey and aims of the workshop and then discussed potential core outcomes and their implementation in trials among moderated breakout groups of eight to 12 people from diverse backgrounds. Transcripts of discussions were analyzed thematically. Results Three themes were identified that supported the proposed core outcomes: limiting disease progression, stability and control, and ensuring universal relevance ( i.e. , applicable across diverse populations and settings). The fourth theme, preparedness for implementation, included engaging with funders and regulators, establishing reliable and validated measures, and leveraging existing endorsements for patient-reported outcomes. Conclusions Workshop themes demonstrated support for kidney function, disease activity, death, life participation, and cardiovascular disease, and these were established as the core outcomes for trials in adults with glomerular disease. Future work is needed to establish the core measures for each domain, with funders and regulators central to the uptake of the core outcome set in trials.
Authors 39
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The University of Sydney · Children's Hospital at Westmead · Westmead Hospital
Affiliation as printed
Centre for Kidney Research, The Children’s Hospital at Westmead, Sydney, Australia
Sydney School of Public Health, The University of Sydney, Sydney, Australia
Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, Australia
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Affiliation as printed
Centre for Inflammatory Disease, Faculty of Medicine, Imperial College London, London, United Kingdom
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Affiliation as printed
Temerty Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada
Toronto General Research Institute, Toronto, Ontario, Canada
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The University of Sydney · Children's Hospital at Westmead · Westmead Hospital
Affiliation as printed
Centre for Kidney Research, The Children’s Hospital at Westmead, Sydney, Australia
Sydney School of Public Health, The University of Sydney, Sydney, Australia
Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, Australia
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All India Institute of Medical Sciences
Affiliation as printed
All India Institute of Medical Sciences, Department of Pediatrics, New Delhi, India
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University of British Columbia
Affiliation as printed
Division of Nephrology, Department of Medicine, University of British Columbia, Vancouver, Canada
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University of Leicester · Leicester General Hospital
Affiliation as printed
Department of Cardiovascular Sciences, University of Leicester, Leicester, United Kingdom
John Walls Renal Unit, Leicester General Hospital, Leicester, United Kingdom
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National and Kapodistrian University of Athens · Laiko General Hospital of Athens
Affiliation as printed
Department of Nephrology and Renal Transplantation, Medical School, University of Athens, Laiko Hospital, Athens, Greece
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Affiliation as printed
Division of Nephrology, University of Louisville, Louisville, Kentucky
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Fondazione Ricerca Molinette · Ospedale Regina Margherita
Affiliation as printed
Molinette Research Foundation, Regina Margherita Hospital, Turin, Italy
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Affiliation as printed
Division of Nephrology and Hypertension, Department of Internal Medicine, Mayo Clinic, Rochester, Minnesota
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Universitätsklinikum Aachen · RWTH Aachen University
Affiliation as printed
Department of Nephrology and Clinical Immunology, RWTH University Hospital, Aachen, Germany
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Sunnybrook Health Science Centre · University of Toronto
Affiliation as printed
Sunnybrook Health Sciences Centre, Toronto, Ontario, Canada
Temerty Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada
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Affiliation as printed
Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania
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Monash Medical Centre · Monash Health · Monash University
Affiliation as printed
Centre for Inflammatory Diseases, Department of Medicine, Monash University, Clayton, Victoria, Australia
Departments of Nephrology and Paediatric Nephrology, Monash Health, Clayton, Victoria, Australia
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Stanford Medicine · Stanford University
Affiliation as printed
Division of Nephrology, Department of Medicine, Stanford University, Stanford, California
Stanford University Medical Center, Stanford, California
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Affiliation as printed
Nephrology, Hospital Fernández, Buenos Aires, Argentina
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Columbia University Irving Medical Center
Affiliation as printed
Columbia University Medical Center, New York, New York
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The Ohio State University Wexner Medical Center · The Ohio State University
Affiliation as printed
Division of Nephrology, Department of Internal Medicine, Ohio State University Wexner Medical Center, Columbus, Ohio
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The University of Sydney · Children's Hospital at Westmead · Westmead Hospital
Affiliation as printed
Centre for Kidney Research, The Children’s Hospital at Westmead, Sydney, Australia
Sydney School of Public Health, The University of Sydney, Sydney, Australia
Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, Australia
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Hospital Británico de Buenos Aires
Affiliation as printed
Nephrology Service and Kidney Transplantation Unit, Hospital Britanico de Buenos Aires, Buenos Aires, Argentina
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Peking University First Hospital
Affiliation as printed
Renal Division of Peking University First Hospital, Beijing, China
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Affiliation as printed
Department of Nephrology, Baylor College of Medicine, Houston, Texas
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Translational Research Institute · The University of Queensland · Princess Alexandra Hospital
Affiliation as printed
Australasian Kidney Trials Network, University of Queensland, Brisbane, Australia
Department of Nephrology, Princess Alexandra Hospital, Brisbane, Australia
Translational Research Institute, Brisbane, Australia
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The University of Sydney · Children's Hospital at Westmead · Westmead Hospital
Affiliation as printed
Centre for Kidney Research, The Children’s Hospital at Westmead, Sydney, Australia
Sydney School of Public Health, The University of Sydney, Sydney, Australia
Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, Australia
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Affiliation as printed
Sydney School of Public Health, The University of Sydney, Sydney, Australia
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The University of Queensland · Princess Alexandra Hospital
Affiliation as printed
Australasian Kidney Trials Network, University of Queensland, Brisbane, Australia
Department of Nephrology, Princess Alexandra Hospital, Brisbane, Australia
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The University of Sydney · Children's Hospital at Westmead · Westmead Hospital
Affiliation as printed
Centre for Kidney Research, The Children’s Hospital at Westmead, Sydney, Australia
Sydney School of Public Health, The University of Sydney, Sydney, Australia
Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, Australia
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Affiliation as printed
Clinic of Pediatrics, Institute of Clinical Medicine, Faculty of Medicine, Vilnius University, Vilnius, Lithuania
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The University of Sydney · Children's Hospital at Westmead · Westmead Hospital
Affiliation as printed
Centre for Kidney Research, The Children’s Hospital at Westmead, Sydney, Australia
Sydney School of Public Health, The University of Sydney, Sydney, Australia
Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, Australia
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The University of Sydney · Children's Hospital at Westmead · Westmead Hospital
Affiliation as printed
Centre for Kidney Research, The Children’s Hospital at Westmead, Sydney, Australia
Sydney School of Public Health, The University of Sydney, Sydney, Australia
Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, Australia
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Sheffield Teaching Hospitals NHS Foundation Trust · Sheffield Kidney Institute
Affiliation as printed
Sheffield Kidney Institute, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, United Kingdom
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The University of Sydney · Children's Hospital at Westmead · Westmead Hospital
Affiliation as printed
Centre for Kidney Research, The Children’s Hospital at Westmead, Sydney, Australia
Sydney School of Public Health, The University of Sydney, Sydney, Australia
Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, Australia
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Children's Hospital at Westmead · Westmead Hospital
Affiliation as printed
Centre for Kidney Research, The Children’s Hospital at Westmead, Sydney, Australia
Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, Australia
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Children's Hospital at Westmead · Westmead Hospital
Affiliation as printed
Centre for Kidney Research, The Children’s Hospital at Westmead, Sydney, Australia
Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, Australia
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The University of Queensland · Sunshine Coast University Hospital
Affiliation as printed
Department of Nephrology, Sunshine Coast University Hospital, Birtinya, Australia
Faculty of Medicine, University of Queensland, Herston, Australia
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Université de Tours · Centre Hospitalier Universitaire de Tours
Affiliation as printed
Department of Nephrology and Clinical Immunology, Tours Hospital, Tours, France
University Francois Rabelais, Tours, France
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The University of Sydney · Children's Hospital at Westmead · Westmead Hospital
Affiliation as printed
Centre for Kidney Research, The Children’s Hospital at Westmead, Sydney, Australia
Sydney School of Public Health, The University of Sydney, Sydney, Australia
Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, Australia
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Affiliation as printed
College of Medicine and Public Health, Flinders University, Adelaide, Australia
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