Implementing core outcomes in kidney disease: report of the Standardized Outcomes in Nephrology (SONG) implementation workshop
Allison Tong(The University of Sydney), Braden Manns(Libin Cardiovascular Institute of Alberta), Angela Yee‐Moon Wang(Queen Mary Hospital), Brenda R. Hemmelgarn(Libin Cardiovascular Institute of Alberta), David C. Wheeler(University College London), John Gill(University of British Columbia), Peter Tugwell(University of Ottawa), Robert Pecoits-Filho(Pontifícia Universidade Católica do Paraná), Sally Crowe, Tess Harris, Wim Van Biesen(Ghent University Hospital), Wolfgang C. Winkelmayer(Baylor College of Medicine), Adeera Levin(University of British Columbia), Aliza Thompson(United States Food and Drug Administration), Vlado Perkovic(The George Institute for Global Health), Angela Ju(The University of Sydney), Talia Gutman(The University of Sydney), Amélie Bernier-Jean(The University of Sydney), Andrea K. Viecelli(Translational Research Institute), Emma O’Lone(The University of Sydney), Jenny I. Shen(University of California, Los Angeles), Michelle A. Josephson(University of Chicago), Yeoungjee Cho(Translational Research Institute), David W. Johnson(Translational Research Institute), Bénédicte Sautenet(Université de Tours), Marcello Tonelli(Libin Cardiovascular Institute of Alberta), Jonathan C. Craig(Flinders University), Jonathan C. Craig(Flinders University), Allison Tong(The University of Sydney), Angela Yee‐Moon Wang(Queen Mary Hospital), Brenda R. Hemmelgarn(Libin Cardiovascular Institute of Alberta), Braden Manns(Libin Cardiovascular Institute of Alberta), David C. Wheeler(University College London), John Gill(University of British Columbia), Peter Tugwell(University of Ottawa), Roberto Pecoits-Filho(Pontifícia Universidade Católica do Paraná), Sally Crowe, Tess Harris, Wim Van Biesen(Ghent University Hospital), Wolfgang C. Winkelmayer(Baylor College of Medicine), Adeera Levin(University of British Columbia), Aditi Sinha, Albert Ong(Children's Hospital at Westmead), Alexis H Denny(Children's Hospital at Westmead), Aliza Thompson(United States Food and Drug Administration), Allison Dart(The University of Sydney), Allison A. Eddy(The University of Sydney), Amélie Bernier-Jean(The University of Sydney), Amy Kelly, Andrea K. Viecelli(Translational Research Institute), Andrew Davenport(Children's Hospital at Westmead), Andrew S. Narva(Children's Hospital at Westmead), Angela Ju(The University of Sydney), Ankit Sharma, Anthony Ν. Warrens, Arlene B. Chapman(Children's Hospital at Westmead), Armando Teixeira‐Pinto, Ayano Kelly, Barbara Murphy(Children's Hospital at Westmead), Bénédicte Sautenet(Université de Tours), Benita Padilla, Bernard Canaud, Brian Pullin, Brigitte Schiller(Children's Hospital at Westmead), Bruce Robinson, Camilla S. Hanson, Carmel M. Hawley, Charlotte Logeman, Charmaine E. Lok, Christoph Wanner, Chuck Herzog(Children's Hospital at Westmead), Claudia Rutherford, Curie Ahn, Daniel Sumpton, David Rosenbloom(Translational Research Institute), David Harris, David Baron(Translational Research Institute), David W. Johnson(Translational Research Institute), David M. White(Translational Research Institute), Debbie S. Gipson, Denis Fouque(Children's Hospital at Westmead), Denise Eilers, Detlef Böckenhauer, Donal O’Donoghue, Dongping Chen, Dyke Dunning, Edwina A. Brown(Children's Hospital at Westmead), Elena Bavlovlenkov(Children's Hospital at Westmead), Elinor C. Mannon(Children's Hospital at Westmead), Emilo Poggio, Emma O’Lone(The University of Sydney), Eric Chemla, Fabienne Dobbels, Faı̈ez Zannad, Fergus Caskey(Children's Hospital at Westmead), Francesca Tentori(Children's Hospital at Westmead), Frank P. Hurst(Children's Hospital at Westmead), Franz Schaefer, Germaine Wong(Children's Hospital at Westmead), Gillian Brunier, Giovanni Strippoli, Gopala K. Rangan(Children's Hospital at Westmead), Greg Knoll(Children's Hospital at Westmead), Gregorio T. Obrador(Children's Hospital at Westmead), Harold I. Feldman, Helen Coolican, Hui‐Kim Yap, Jaap W. Groothoff, James A. Sloand(Children's Hospital at Westmead), Jane C. Tan(Children's Hospital at Westmead), Jayme E. Locke, Jeffrey Perl(Children's Hospital at Westmead), Jenny I. Shen(University of California, Los Angeles), Jeremy R. Chapman(Children's Hospital at Westmead), Jie Dong, Jolanta Małyszko, Jonathan Fox(Flinders University), Juan Dapueto, Juliana Tze‐Wah Kao, Kai Ming Chow, Karine Manera, Karolis Ažukaitis, Kevan R. Polkinghorne, Kevin Fowler, Kim Linh Van(Ghent University Hospital), Klemens Budde, Krista L. Lentine, Krister Cromm, Lai Seong Hooi, Laura James(Children's Hospital at Westmead), Laura M. Dember, Li Zuo(Libin Cardiovascular Institute of Alberta), Lionel Rostaing, Liz Lightstone(United States Food and Drug Administration), Lorna Marson, Lorraine Hamiwka, Mahesh Krishnan, Marcello Tonelli(Libin Cardiovascular Institute of Alberta), Marinella Ruospo, Mark L. Unruh, Martin Wilkie, Martin Howell, Mary Amanda Dew, Meg Jardine, Melissa West, Michael Zappitelli, Michael J. Germain(Children's Hospital at Westmead), Michelle A. Josephson(University of Chicago), Mike Rocco, Myra A. Kleinpeter, Nichole Jefferson, Nick Webb, Nicole Evangelidis, Nieltje Gedney, Pam Duquette, Peter G. Kerr(University of Ottawa), Patrick Rossignol, Peter P. Reese(University of Ottawa), Peter J. Blankestijn, Prabir Roy‐Chaudhury, Priti Patel, Quinetta Taylor, Rachel Perlman, Rainer Oberbauer, Rajnish Mehrotra, Raymond Vanholder, Richard Fluck, Richard McGee, Robert R. Quinn(Pontifícia Universidade Católica do Paraná), Robert Lee(Pontifícia Universidade Católica do Paraná), Ron T. Gansevoort(Children's Hospital at Westmead), Ronald D. Perrone, Ronke Apata, Roslyn B. Mannon(Children's Hospital at Westmead), Sajeda Youssouf, Sara N. Davison, Sarah Bernays, Sarala Naiker, Sharon Teo, Sheila G. Jowsey‐Gregoire, Simon Carter, Stefano Stuard(Children's Hospital at Westmead), Stephen I. Alexander, S. McDonald, Steve Chadban, Stuart L. Goldstein, Susan L. Furth, Susan Samuel, Talia Gutman(The University of Sydney), Tariq Shafi, Tazeen Jafar, Thomas F. Hiemstra, T. Pruett, Timmy Lee, Tushar J. Vachharajani, Vanita Jassal, Vera Krane, Vicente E. Torres, Vivekanand Jha, Vlado Perkovic(The George Institute for Global Health), William G. Herrington, Yeoungjee Cho(Translational Research Institute), Yoonkyu Oh(Translational Research Institute), York Pei, Zeeshan Butt
Cited by 203Open Access
Abstract
There are an estimated 14,000 randomized trials published in chronic kidney disease. The most frequently reported outcomes are biochemical endpoints, rather than clinical and patient-reported outcomes including cardiovascular disease, mortality, and quality of life. While many trials have focused on optimizing kidney health, the heterogeneity and uncertain relevance of outcomes reported across trials may limit their policy and practice impact. The international Standardized Outcomes in Nephrology (SONG) Initiative was formed to identify core outcomes that are critically important to patients and health professionals, to be reported consistently across trials. We convened a SONG Implementation Workshop to discuss the implementation of core outcomes. Eighty-two patients/caregivers and health professionals participated in plenary and breakout discussions. In this report, we summarize the findings of the workshop in two main themes: socializing the concept of core outcomes, and demonstrating feasibility and usability. We outline implementation strategies and pathways to be established through partnership with stakeholders, which may bolster acceptance and reporting of core outcomes in trials, and encourage their use by end-users such as guideline producers and policymakers to help improve patient-important outcomes.
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