. 2018 Dec;94(6):1053-1068.

doi: 10.1016/j.kint.2018.08.018. Epub 2018 Oct 22.

Implementing core outcomes in kidney disease: report of the Standardized Outcomes in Nephrology (SONG) implementation workshop

Allison Tong¹, Braden Manns², Angela Yee Moon Wang³, Brenda Hemmelgarn², David C Wheeler⁴, John Gill⁵, Peter Tugwell⁶, Robert Pecoits-Filho⁷, Sally Crowe⁸, Tess Harris⁹, Wim Van Biesen¹⁰, Wolfgang C Winkelmayer¹¹, Adeera Levin⁵, Aliza Thompson¹², Vlado Perkovic¹³, Angela Ju¹⁴, Talia Gutman¹⁴, Amelie Bernier-Jean¹⁴, Andrea K Viecelli¹⁵, Emma O'Lone¹⁴, Jenny Shen¹⁶, Michelle A Josephson¹⁷, Yeoungjee Cho¹⁵, David W Johnson¹⁵, Bénédicte Sautenet¹⁸, Marcello Tonelli², Jonathan C Craig¹⁹; SONG Implementation Workshop Investigators

Collaborators, Affiliations

Collaborators

SONG Implementation Workshop Investigators:
Jonathan Craig, Allison Tong, Angela Wang, Brenda Hemmelgarn, Braden Manns, David Wheeler, John Gill, Peter Tugwell, Roberto Pecoits-Filho, Sally Crowe, Tess Harris, Wim van Biesen, Wolfgang Winkelmayer, Adeera Levin, Aditi Sinha, Albert Ong, Alexis Denny, Aliza Thompson, Allison Dart, Allison Eddy, Amelie Bernier-Jean, Amy Kelly, Andrea Viecelli, Andrew Davenport, Andrew Narva, Angela Ju, Ankit Sharma, Anthony Warrens, Arlene Chapman, Armando Teixeira-Pinto, Ayano Kelly, Barbara Murphy, Benedicte Sautenet, Benita Padilla, Bernard Canaud, Brian Pullin, Brigitte Schiller, Bruce Robinson, Camilla Hanson, Carmel Hawley, Charlotte Logeman, Charmaine Lok, Christoph Wanner, Chuck Herzog, Claudia Rutherford, Curie Ahn, Daniel Sumpton, David Rosenbloom, David Harris, David Baron, David Johnson, David White, Debbie Gipson, Denis Fouque, Denise Eilers, Detlef Bockenhauer, Donal O'Donoghue, Dongping Chen, Dyke Dunning, Edwina Brown, Elena Bavlovlenkov, Elinor Mannon, Emilo Poggio, Emma O'Lone, Eric Chemla, Fabienne Dobbels, Faiez Zannad, Fergus Caskey, Francesca Tentori, Frank Hurst, Franz Schaefer, Germaine Wong, Gillian Brunier, Giovanni Strippoli, Gopala Rangan, Greg Knoll, Gregorio Obrador, Harold Feldman, Helen Coolican, Hui-Kim Yap, Jaap Groothoff, James Sloand, Jane Tan, Jayme Locke, Jeffrey Perl, Jenny Shen, Jeremy Chapman, Jie Dong, Jolanta Malyszko, Jonathan Fox, Juan Dapueto, Juliana Tze-Wah Kao, Kai Ming Chow, Karine Manera, Karolis Azukaitis, Kevan Polkinghorne, Kevin Fowler, Kim Linh Van, Klemens Budde, Krista Lentine, Krister Cromm, Lai-Seong Hooi, Laura James, Laura Dember, Li Zuo, Lionel Rostaing, Liz Lightstone, Lorna Marson, Lorraine Hamiwka, Mahesh Krishnan, Marcello Tonelli, Marinella Ruospo, Mark Unruh, Martin Wilkie, Martin Howell, Mary Amanda Dew, Meg Jardine, Melissa West, Michael Zappitelli, Michael Germain, Michelle Josephson, Mike Rocco, Myra Kleinpeter, Nichole Jefferson, Nick Webb, Nicole Evangelidis, Nieltje Gedney, Pam Duquette, Peter Kerr, Patrick Rossignol, Peter Reese, Peter J Blankestijn, Prabir Roy-Chaudhury, Priti Patel, Quinetta Taylor, Rachel Perlman, Rainer Oberbauer, Rajnish Mehrotra, Raymond Vanholder, Richard Fluck, Richard McGee, Rob Quinn, Robert Lee, Ron Gansevoort, Ronald Perrone, Ronke Apata, Roslyn Mannon, Sajeda Youssouf, Sara Davison, Sarah Bernays, Sarala Naiker, Sharon Teo, Sheila Jowsey-Gregoire, Simon Carter, Stefano Stuard, Stephen Alexander, Stephen McDonald, Steve Chadban, Stuart Goldstein, Susan Furth, Susan Samuel, Talia Gutman, Tariq Shafi, Tazeen Jafar, Thomas Hiemstra, Tim Pruett, Timmy Lee, Tushar Vachharajani, Vanita Jassal, Vera Krane, Vicente Torres, Vivekanand Jha, Vlado Perkovic, Will Herrington, Yeoungjee Cho, Yoonkyu Oh, York Pei, Zeeshan Butt

Affiliations

¹ The University of Sydney School of Public Health, Sydney, New South Wales, Australia; Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, New South Wales, Australia. Electronic address: allison.tong@sydney.edu.au.
² Department of Medicine, Libin Cardiovascular Institute and O'Brien Institute of Public Health, University of Calgary, Calgary, Alberta, Canada; Department of Community Health Sciences, Libin Cardiovascular Institute and O'Brien Institute of Public Health, University of Calgary, Calgary, Alberta, Canada.
³ Department of Medicine, Queen Mary Hospital, The University of Hong Kong, Hong Kong.
⁴ Centre for Nephrology, University College London, London, UK.
⁵ Division of Nephrology, University of British Columbia, Vancouver, British Columbia, Canada.
⁶ Department of Medicine, University of Ottawa, Ottawa, Ontario, Canada.
⁷ Department of Internal Medicine, School of Medicine, Pontifícia Universidade Católica do Paraná, Brazil.
⁸ Crowe Associates Ltd., London, UK.
⁹ Polycystic Kidney Disease International, London, UK.
¹⁰ Renal Division, Ghent University Hospital, Ghent, Belgium.
¹¹ Selzman Institute for Kidney Health, Section of Nephrology, Baylor College of Medicine, Houston, Texas, USA.
¹² Division of Cardiovascular and Renal Products, Center for Drug Evaluation and Research, United States Food and Drug Administration, Washington, DC, USA.
¹³ The George Institute for Global Health, Sydney, Australia.
¹⁴ The University of Sydney School of Public Health, Sydney, New South Wales, Australia; Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, New South Wales, Australia.
¹⁵ Faculty of Medicine, University of Queensland at Princess Alexandra Hospital, Brisbane, Australia; Centre for Kidney Disease Research, Translational Research Institute, Brisbane, Australia.
¹⁶ Department of Nephrology, Los Angeles Biomedical Research Institute at Harbor-University of California, Los Angeles Medical Center, Los Angeles, California, USA.
¹⁷ Department of Medicine, The University of Chicago, Chicago, Illinois, USA.
¹⁸ Department of Nephrology Hypertension, Dialysis, Kidney Transplantation, Tours Hospital, SPHERE (Methods in Patient-Centered Outcomes and Health Research)-Institut National de la Santé et de la Recherche Médicale 1246, University of Tours and Nantes, Tours, France.
¹⁹ College of Medicine and Public Health, Flinders University, Adelaide, Australia.

PMID: 30360959
PMCID: PMC6620755
DOI: 10.1016/j.kint.2018.08.018

Implementing core outcomes in kidney disease: report of the Standardized Outcomes in Nephrology (SONG) implementation workshop

Allison Tong et al. Kidney Int. 2018 Dec.

. 2018 Dec;94(6):1053-1068.

doi: 10.1016/j.kint.2018.08.018. Epub 2018 Oct 22.

Authors

Collaborators

SONG Implementation Workshop Investigators:
Jonathan Craig, Allison Tong, Angela Wang, Brenda Hemmelgarn, Braden Manns, David Wheeler, John Gill, Peter Tugwell, Roberto Pecoits-Filho, Sally Crowe, Tess Harris, Wim van Biesen, Wolfgang Winkelmayer, Adeera Levin, Aditi Sinha, Albert Ong, Alexis Denny, Aliza Thompson, Allison Dart, Allison Eddy, Amelie Bernier-Jean, Amy Kelly, Andrea Viecelli, Andrew Davenport, Andrew Narva, Angela Ju, Ankit Sharma, Anthony Warrens, Arlene Chapman, Armando Teixeira-Pinto, Ayano Kelly, Barbara Murphy, Benedicte Sautenet, Benita Padilla, Bernard Canaud, Brian Pullin, Brigitte Schiller, Bruce Robinson, Camilla Hanson, Carmel Hawley, Charlotte Logeman, Charmaine Lok, Christoph Wanner, Chuck Herzog, Claudia Rutherford, Curie Ahn, Daniel Sumpton, David Rosenbloom, David Harris, David Baron, David Johnson, David White, Debbie Gipson, Denis Fouque, Denise Eilers, Detlef Bockenhauer, Donal O'Donoghue, Dongping Chen, Dyke Dunning, Edwina Brown, Elena Bavlovlenkov, Elinor Mannon, Emilo Poggio, Emma O'Lone, Eric Chemla, Fabienne Dobbels, Faiez Zannad, Fergus Caskey, Francesca Tentori, Frank Hurst, Franz Schaefer, Germaine Wong, Gillian Brunier, Giovanni Strippoli, Gopala Rangan, Greg Knoll, Gregorio Obrador, Harold Feldman, Helen Coolican, Hui-Kim Yap, Jaap Groothoff, James Sloand, Jane Tan, Jayme Locke, Jeffrey Perl, Jenny Shen, Jeremy Chapman, Jie Dong, Jolanta Malyszko, Jonathan Fox, Juan Dapueto, Juliana Tze-Wah Kao, Kai Ming Chow, Karine Manera, Karolis Azukaitis, Kevan Polkinghorne, Kevin Fowler, Kim Linh Van, Klemens Budde, Krista Lentine, Krister Cromm, Lai-Seong Hooi, Laura James, Laura Dember, Li Zuo, Lionel Rostaing, Liz Lightstone, Lorna Marson, Lorraine Hamiwka, Mahesh Krishnan, Marcello Tonelli, Marinella Ruospo, Mark Unruh, Martin Wilkie, Martin Howell, Mary Amanda Dew, Meg Jardine, Melissa West, Michael Zappitelli, Michael Germain, Michelle Josephson, Mike Rocco, Myra Kleinpeter, Nichole Jefferson, Nick Webb, Nicole Evangelidis, Nieltje Gedney, Pam Duquette, Peter Kerr, Patrick Rossignol, Peter Reese, Peter J Blankestijn, Prabir Roy-Chaudhury, Priti Patel, Quinetta Taylor, Rachel Perlman, Rainer Oberbauer, Rajnish Mehrotra, Raymond Vanholder, Richard Fluck, Richard McGee, Rob Quinn, Robert Lee, Ron Gansevoort, Ronald Perrone, Ronke Apata, Roslyn Mannon, Sajeda Youssouf, Sara Davison, Sarah Bernays, Sarala Naiker, Sharon Teo, Sheila Jowsey-Gregoire, Simon Carter, Stefano Stuard, Stephen Alexander, Stephen McDonald, Steve Chadban, Stuart Goldstein, Susan Furth, Susan Samuel, Talia Gutman, Tariq Shafi, Tazeen Jafar, Thomas Hiemstra, Tim Pruett, Timmy Lee, Tushar Vachharajani, Vanita Jassal, Vera Krane, Vicente Torres, Vivekanand Jha, Vlado Perkovic, Will Herrington, Yeoungjee Cho, Yoonkyu Oh, York Pei, Zeeshan Butt

Affiliations

¹ The University of Sydney School of Public Health, Sydney, New South Wales, Australia; Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, New South Wales, Australia. Electronic address: allison.tong@sydney.edu.au.
² Department of Medicine, Libin Cardiovascular Institute and O'Brien Institute of Public Health, University of Calgary, Calgary, Alberta, Canada; Department of Community Health Sciences, Libin Cardiovascular Institute and O'Brien Institute of Public Health, University of Calgary, Calgary, Alberta, Canada.
³ Department of Medicine, Queen Mary Hospital, The University of Hong Kong, Hong Kong.
⁴ Centre for Nephrology, University College London, London, UK.
⁵ Division of Nephrology, University of British Columbia, Vancouver, British Columbia, Canada.
⁶ Department of Medicine, University of Ottawa, Ottawa, Ontario, Canada.
⁷ Department of Internal Medicine, School of Medicine, Pontifícia Universidade Católica do Paraná, Brazil.
⁸ Crowe Associates Ltd., London, UK.
⁹ Polycystic Kidney Disease International, London, UK.
¹⁰ Renal Division, Ghent University Hospital, Ghent, Belgium.
¹¹ Selzman Institute for Kidney Health, Section of Nephrology, Baylor College of Medicine, Houston, Texas, USA.
¹² Division of Cardiovascular and Renal Products, Center for Drug Evaluation and Research, United States Food and Drug Administration, Washington, DC, USA.
¹³ The George Institute for Global Health, Sydney, Australia.
¹⁴ The University of Sydney School of Public Health, Sydney, New South Wales, Australia; Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, New South Wales, Australia.
¹⁵ Faculty of Medicine, University of Queensland at Princess Alexandra Hospital, Brisbane, Australia; Centre for Kidney Disease Research, Translational Research Institute, Brisbane, Australia.
¹⁶ Department of Nephrology, Los Angeles Biomedical Research Institute at Harbor-University of California, Los Angeles Medical Center, Los Angeles, California, USA.
¹⁷ Department of Medicine, The University of Chicago, Chicago, Illinois, USA.
¹⁸ Department of Nephrology Hypertension, Dialysis, Kidney Transplantation, Tours Hospital, SPHERE (Methods in Patient-Centered Outcomes and Health Research)-Institut National de la Santé et de la Recherche Médicale 1246, University of Tours and Nantes, Tours, France.
¹⁹ College of Medicine and Public Health, Flinders University, Adelaide, Australia.

PMID: 30360959
PMCID: PMC6620755
DOI: 10.1016/j.kint.2018.08.018

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.

Keywords: core outcome sets; implementation; kidney disease; outcomes; patient-centered care; trials.

PubMed Disclaimer

Conflict of interest statement

DISCLOSURE

All the authors declared no competing interests.

Figures

**Figure 1 |. Core outcome sets for Standardized Outcomes in Nephrology (SONG).**
Outcome sets for (a) SONG-Hemodialysis (SONG-HD) and (b) SONG–Kidney Transplantation (SONG-Tx) are shown.

See this image and copyright information in PMC

References

1. Cochrane Kidney and Transplant. Cochrane Kidney and Transplant Register of Studies. Available at: http://kidneyandtransplant.cochrane.org/cochrane-kidney-and-transplant-s.... Accessed March 1, 2018.
1. Robinson BM, Zhang J, Morgenstern H, et al. Worldwide, mortality risk is high soon after initiation of hemodialysis. Kidney Int. 2014;85:158–165. - PMC - PubMed
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Implementing core outcomes in kidney disease: report of the Standardized Outcomes in Nephrology (SONG) implementation workshop

Collaborators

Affiliations

Implementing core outcomes in kidney disease: report of the Standardized Outcomes in Nephrology (SONG) implementation workshop

Authors

Collaborators

Affiliations

Abstract

Conflict of interest statement

Figures

References

Publication types

MeSH terms

Grants and funding

LinkOut - more resources

Full Text Sources

Medical