Sydney School of Public Health, The University of Sydney; Head, Clinical Research, Centre for Kidney research and Paediatric Nephrologist, The Children's Hospital at Westmead
Sydney School of Public Health, The University of Sydney
Departments of Medicine and Community Health Science, The University of Calgary
Centre for Nephrology, Division of Medicine, University College London
Division of Nephrology, University of British Columbia, St. Paul’s Hospital
Epidemiology and Community Medicine; Director, Centre for Global Health, University of Ottawa
Crowe Associates Ltd
PKD International; CEO, UK Polycystic Kidney Disease Charity
Ghent University Hospital
Baylor College of Medicine
The SONG Initiative // e-newsletter December 2016 It is hard to believe that 2016 is drawing to a close and what an incredible year it has been thanks to your involvement in the SONG Initiative! Your ongoing contribution will help to ensure that clinical trials report meaningful outcomes so people with chronic kidney disease, their families, […]
“Outstanding sessions enriched by the patient engagement.” – workshop participant Two SONG-HD workshops were held 18th-19th November 2016 during the American Society of Nephrology Kidney Week in Chicago. Patients, caregivers, and health professionals came together to discuss core outcome measures for vascular access and fatigue, to be used in all trials in haemodiaysis. We thank […]
Welcome to our first edition of the SONG Initiative e-newsletter. Click on the link to get an update on core outcomes, activities, and ways to get involved.
The workshop brought together 68 patients, family members, and health professionals who engaged in very interesting discussions about establishing core outcomes to be reported in trials in kidney transplantation. A brief report and photos are available here.
What were the top 5? Fatigue/energy, survival (defined by patients as resilience and coping, ability to travel, dialysis-free time, impact on family, and ability to work. Full article in the American Journal of Kidney Disease now published online.
A massive thank you to the 1018 people who completed Round 1. Analysis and preparation is now underway for Round 2.
Almost one week since launch and 400 have completed Round 1. You can still join – just register here.
Join the panel to have your say on what outcomes are important for kidney transplantation research! Your involvement is important to help ensure that kidney transplantation research includes outcomes that are important to you. Register here.
David Rosenbloom presents findings at the Annual CMS Quality Conference in Baltimore. Read his inspiring blog here: The SONG-HD Initiative: It’s not the same old song, and it’s got a very different meaning.
The SONG-HD Delphi survey has just closed. We thank the 840 participants who completed all three rounds of the survey.
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