Glomerular Disease (glomerulonephritis) is a group of diseases that injure the part of the kidney that filters blood (called glomeruli). Other terms you may hear used are nephritis and nephrotic syndrome. Join the Delphi Panel by taking part in a global survey, which asks about what impacts of treatment and disease are important to you […]

SONG E-Newsletter December 2018 Edition Dear Allison, It’s been full steam ahead in 2018 for SONG with the involvement of over 5500 patients, families and health professionals working towards establishing core outcome sets across the spectrum of chronic kidney disease. Your involvement is needed to help identify and address outcomes that are important to patients, families and their […]

As we near the holiday season, it is a good time to reflect on the year that was – and especially to thank everyone who has generously contributed their time, expertise, and effort, which has helped to extend the reach and impact of the SONG Initiative. This edition of the newsletter will provide some recent […]

The first half of 2017 has flown by and we thank everyone who contributed to all the SONG surveys, workshops, events and activities this year. Your involvement helps to ensure that critically important and relevant outcomes are included in research in people with kidney disease. This newsletter will provide the latest updates on the various […]

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.