{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,2]],"date-time":"2026-10-02T17:38:07Z","timestamp":1790962687994,"version":"4.1.0"},"reference-count":41,"publisher":"Ovid Technologies (Wolters Kluwer Health)","issue":"1","funder":[{"DOI":"10.13039\/501100000925","name":"National Health and Medical Research Council","doi-asserted-by":"publisher","award":["1114539"],"award-info":[{"award-number":["1114539"]}],"id":[{"id":"10.13039\/501100000925","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100000925","name":"National Health and Medical Research Council","doi-asserted-by":"publisher","award":["1126256"],"award-info":[{"award-number":["1126256"]}],"id":[{"id":"10.13039\/501100000925","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100000925","name":"National Health and Medical Research Council","doi-asserted-by":"publisher","award":["1168994"],"award-info":[{"award-number":["1168994"]}],"id":[{"id":"10.13039\/501100000925","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100000925","name":"National Health and Medical Research Council","doi-asserted-by":"publisher","award":["1169149"],"award-info":[{"award-number":["1169149"]}],"id":[{"id":"10.13039\/501100000925","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100000925","name":"National Health and Medical Research Council","doi-asserted-by":"publisher","award":["1190850"],"award-info":[{"award-number":["1190850"]}],"id":[{"id":"10.13039\/501100000925","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100000002","name":"National Institutes of Health","doi-asserted-by":"publisher","award":["K08DK102542"],"award-info":[{"award-number":["K08DK102542"]}],"id":[{"id":"10.13039\/100000002","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["lww.com","ovid.com"],"crossmark-restriction":true},"short-container-title":["CJASN"],"published-print":{"date-parts":[[2022,1]]},"abstract":"<jats:sec>\n                    <jats:title>Background and objectives<\/jats:title>\n                    <jats:p>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\u2013Glomerular 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.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Design, setting, participants, and measurements<\/jats:title>\n                    <jats:p>\n                      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                      <jats:italic toggle=\"yes\">n<\/jats:italic>\n                      =9), kidney-limited nephrotic disease (\n                      <jats:italic toggle=\"yes\">n<\/jats:italic>\n                      =9), or other kidney-limited glomerular disease (\n                      <jats:italic toggle=\"yes\">n<\/jats:italic>\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.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>\n                      Three themes were identified that supported the proposed core outcomes: limiting disease progression, stability and control, and ensuring universal relevance (\n                      <jats:italic toggle=\"yes\">i.e.<\/jats:italic>\n                      , 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.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>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.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.2215\/cjn.07840621","type":"journal-article","created":{"date-parts":[[2021,12,30]],"date-time":"2021-12-30T14:10:24Z","timestamp":1640873424000},"page":"53-64","update-policy":"https:\/\/doi.org\/10.1097\/lww.0000000000001000","source":"Crossref","is-referenced-by-count":15,"title":["A Core Outcome Set for Trials in Glomerular Disease"],"prefix":"10.2215","volume":"17","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-7884-7015","authenticated-orcid":false,"given":"Simon A.","family":"Carter","sequence":"first","affiliation":[{"name":"Sydney School of Public Health, The University of Sydney, Sydney, Australia"},{"name":"Centre for Kidney Research, The Children\u2019s Hospital at Westmead, Sydney, Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Liz","family":"Lightstone","sequence":"additional","affiliation":[{"name":"Centre for Inflammatory Disease, Faculty of Medicine, Imperial College London, London, United Kingdom"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Dan","family":"Cattran","sequence":"additional","affiliation":[{"name":"Temerty Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada"},{"name":"Toronto General Research Institute, Toronto, Ontario, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Allison","family":"Tong","sequence":"additional","affiliation":[{"name":"Sydney School of Public Health, The University of Sydney, Sydney, Australia"},{"name":"Centre for Kidney Research, The Children\u2019s Hospital at Westmead, Sydney, Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Arvind","family":"Bagga","sequence":"additional","affiliation":[{"name":"All India Institute of Medical Sciences, Department of Pediatrics, New Delhi, India"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sean J.","family":"Barbour","sequence":"additional","affiliation":[{"name":"Division of Nephrology, Department of Medicine, University of British Columbia, Vancouver, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-9063-7229","authenticated-orcid":false,"given":"Jonathan","family":"Barratt","sequence":"additional","affiliation":[{"name":"Department of Cardiovascular Sciences, University of Leicester, Leicester, United Kingdom"},{"name":"John Walls Renal Unit, Leicester General Hospital, Leicester, United Kingdom"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"John","family":"Boletis","sequence":"additional","affiliation":[{"name":"Department of Nephrology and Renal Transplantation, Medical School, University of Athens, Laiko Hospital, Athens, Greece"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Dawn J.","family":"Caster","sequence":"additional","affiliation":[{"name":"Division of Nephrology, University of Louisville, Louisville, Kentucky"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rosanna","family":"Coppo","sequence":"additional","affiliation":[{"name":"Molinette Research Foundation, Regina Margherita Hospital, Turin, Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-9952-209X","authenticated-orcid":false,"given":"Fernando C.","family":"Fervenza","sequence":"additional","affiliation":[{"name":"Division of Nephrology and Hypertension, Department of Internal Medicine, Mayo Clinic, Rochester, Minnesota"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"J\u00fcrgen","family":"Floege","sequence":"additional","affiliation":[{"name":"Department of Nephrology and Clinical Immunology, RWTH University Hospital, Aachen, Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Michelle A.","family":"Hladunewich","sequence":"additional","affiliation":[{"name":"Temerty Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada"},{"name":"Sunnybrook Health Sciences Centre, Toronto, Ontario, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jonathan J.","family":"Hogan","sequence":"additional","affiliation":[{"name":"Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-2713-2391","authenticated-orcid":false,"given":"A. 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