E-newsletter December 2016

“Chicago 2016: Outstanding sessions enriched by patient engagement” >> Over 100 patients, caregivers and health professionals participated in the three SONG-HD Events held during the American Society of Nephrology Kidney Week in Chicago (November 2016). We had very interesting and dynamic discussions on fatigue and vascular access, which will inform the next steps in choosing the best way of measuring these outcome domains in clinical trials. With over 40 different ways of measuring fatigue, and 900 different outcome measures for vascular access outcomes – this will be no mean feat! The survey and workshop reports will be available next year. We aim to finalise the core outcome measure for fatigue and vascular access by mid-2017.

The first face-to-face meeting of the SONG-HD Cardiovascular Disease Expert Working Group was also held in Chicago. Patients, nephrologists, a cardiologist, regulators, and researchers came together to map out the plan to identify the most important cardiovascular disease outcome to measure in trials in haemodialysis.

What’s happening in 2017? Surveys on fatigue (English, Spanish) and vascular access outcomes (English, Chinese) are still open. Next year, we will launch a short survey on cardiovascular outcomes. The results will be used to help choose the most appropriate way to measure these outcomes.

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“As long as I have a kidney transplant that functions, that matters above all other things” >> More than 1000 patients, caregivers and health professionals around the world participated in the SONG-Tx Delphi survey and two consensus workshops held in Boston during the American Transplant Congress and Hong Kong at the Congress of the Transplantation Society. The enthusiastic exchange of experiences, expertise and suggestions, will inform the way forward in identifying and implementing core outcome domains in trials in kidney transplantation.

What are the proposed SONG-Tx core outcome domains? Graft health (which means health of the transplanted kidney and includes 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. The workshop report will be available next year. Expert working groups are now being convened to embark on the next steps in working out the most appropriate and feasible way of measuring each of these outcome domains.

We are also pleased to announce that SONG-Tx was just awarded a National Health and Medical Research Project Grant from the Australian Government to support this stream of work.