• E-newsletter December 2016

    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, and clinicians can make informed decisions about treatment. This e-newsletter highlights some of the SONG events this year, and provides a glimpse into what is planned for 2017.

    SONG-HD (Haemodialysis)

    “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.

    SONG-Tx (Kidney transplantation)

    “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.

    SONG-Kids (Children and adolescents)

    Children and families have their say on what outcomes matter >> We want to say a big thank you to the 52 wonderful children and parents who participated in the SONG-Kids focus groups in Vancouver, Calgary and Houston. They shared their goals, challenges, and inspiring stories, and told us what outcomes were important for research. Energy, immunity, worry/anxiety, having to go to hospital, pain, thirst, and growth, were some of the top priorities for children. Next year, we will finish our final round of focus groups  in Australia.
    Also, the SONG-Kids Steering Group had two face-to-face meetings during the Congress of the International Paediatric Nephrology Association in Iguacu, Brazil; and the American Society of Nephrology Kidney Week in Chicago, United States. In Chicago, the Steering Group were joined by parents as well as representatives from the US Food and Drug Administration (FDA) and the National Institutes of Health (NIH).


    The SONG-Kids Delphi Survey is planned to open April 2017. If you are interested and want to have your say on what outcomes are important for children with chronic kidney disease, please register your details here.

    SONG-PD (Peritoneal dialysis)

    SONG-PD is set to kick off in the new year!

    Other news and updates

    Moving onwards and outwards: With five streams (SONG-HD, Tx, Kids, PD, and PKD) running in 2017, we are moving onwards – as well as outwards to ensure the important outcomes are included in research across the whole spectrum of kidney disease.


    ***And finally, we wish everyone a safe and happy holiday season!***


    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, SONG-PD), Expert Working Groups, and Investigators.
    w: contactus@songinitiative.org | e: contactus@songinitiative.org | p: +612 9845 1467 | twitter: @song_initiative
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