The SONG Initiative // e-newsletter September 2016
Thank you for your support and contribution to the global Standardised Outcomes in Nephrology (SONG) Initiative! Since 2015, the SONG Initiative has brought together patients, caregivers and health professionals to identify and prioritise outcomes for research – beginning with haemodialysis. Clinical trials that report important and relevant outcomes can help patients and their clinicians make decisions about treatment. This first SONG e-newsletter brings you an update on the core outcomes, activities, and opportunities to get involved …
Announcing the SONG-HD core outcomes >> With input from more than 1200 patients, caregivers, and health professionals worldwide, the proposed SONG-HD core outcome domains are: fatigue, vascular access complications, cardiovascular disease, and death. The detailed report will be released for public comment later this year and we would welcome your feedback.
Expert working groups are now in full force to come up with feasible and valid measures for each of these outcome domains. During September/October 2016, you will be invited to take part in a short survey to have your say on what aspects of fatigue and vascular access complications you think are important to measure and report in research in haemodialysis.
SONG-Tx (Kidney transplantation)
The second SONG stream kicked off this year to identify core outcomes for kidney transplantation (SONG-Tx). The results of the global SONG-Tx Delphi survey (involving 1018 patients, caregivers, and health professionals) were discussed at recent stakeholder consensus workshops during the American Transplant Congress (Boston, June 2016) and the International Congress of The Transplantation Society (Hong Kong, August 2016). More than 100 patients, family members and health professionals came together in conversation to identify important outcomes for research in kidney transplantation. The top prioritised outcomes were: graft health(including graft loss, graft function, acute graft rejection, chronic graft rejection), infection, cardiovascular disease, cancer (non-skin), life participation(ability to participate in meaningful activities e.g. work, study, home and family responsibilities, hobbies), and death. A report will be circulated for public comment to finalise the SONG-Tx core outcome domains.
SONG-Kids (Children and adolescents)
SONG-Kids also began to roll out this year. Across Australia, Canada and the United States, children and families are taking part in focus groups to tell us what outcomes really matter in chronic kidney disease. The SONG-Kids Delphi survey is set to launch in 2017 and registration to participate on the Delphi panel is now open.
Other news and updates
Responding to calls for a paradigm shift in clinical trials: “Put patients front and centre when choosing outcomes for trials” – this key message that came through loud and clear at the recent Kidney Disease Improving Global Outcomes (KDIGO) Clinical Trials Conference in Paris (September 2016). In collaboration with KDIGO, we will ensure that the voices of patients are heard and that their priorities for outcomes are integrated in clinical trials.
What SONG streams are happening next? SONG-PD (peritoneal dialysis) and SONG-PKD (polycystic kidney disease) are planned to commence in 2017.
SONG Executive Committee | Jonathan Craig (Chair), Braden Manns, Brenda Hemmelgarn, David Wheeler, John Gill, Peter Tugwell, Sally Crowe, Tess Harris, Wim Van Biesen, Wolfgang Winkelmayer, Allison Tong, Nicole Evangelidis
Please see the website for members of the Steering Groups (SONG-HD, SONG-Tx, SONG-Kids), Expert Working Groups, and Investigators.