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 SONG projects and highlights some opportunities to get involved.
First, a warm welcome to Roberto Pecoits-Filho (Pontifical Catholic University of Paraná, Brazil) and Angela Wang (The University of Hong Kong, Hong Kong) who have been newly appointed to the SONG Executive Committee. Their internationally recognised expertise and diverse experiences will be invaluable as we move forward to expand the scope and impact of SONG.
|Launch of the new SONG Handbook
We are pleased to announce the launch of the SONG Handbook for establishing and implementing core outcomes in chronic kidney disease. Download your copy here.
Time to implement!
Having established core outcome domains for haemodialysis and kidney transplantation, we are now inviting endorsement from professional societies, trial networks, registries, journals, research, and patient organisations, to support the implementation and use of core outcomes.
To date, the Australian and New Zealand Society of Nephrology (ANZSN), Canadian Society of Nephrology (CSN), and European Renal Best Practice (ERBP) have endorsed the SONG core outcomes for haemodialysis and kidney transplantation.
The SONG-HD core outcomes are available here and work is underway to identify the best way of measuring each of these outcomes.
– a “hard hurdle to get over“
Based on a systematic review of all existing measures used for fatigue in haemodialysis, feedback from the English and Spanish language survey completed by over 550 participants, and the consensus workshop held in Chicago, we have developed a core measure for fatigue, focusing on the top 3 dimensions identified which are life participation, tiredness and level of energy. We will be piloting this with patients on haemodialysis.
– function the top priority
Over 820 participants have completed the vascular access survey in English, Spanish, Chinese or Malay and have helped to identify a core outcome for vascular access. The SONG-HD vascular access report is now being finalised, which summarises the discussions from the Chicago consensus workshop with patients, caregivers, and health professionals. Vascular access function was found to be the most important outcome. The next steps are to endorse and validate a core outcome measure for function!
– what matters the most?
A survey is now open to identify which cardiovascular outcome is the most important to patients needing haemodialysis, caregivers/family members, and health professionals. Click here to receive an invitation to complete survey. The results will be discussed at the upcoming SONG-HD cardiovascular disease workshop later this year.
|SONG-Tx KIDNEY TRANSPLANTATION||The SONG-Tx Delphi Consensus Survey and Consensus Workshop have both been published in the journal Transplantation, with graft survival, life participation, cardiovascular disease, cancer, and infection established as core outcome domains. In May 2017, we convened a stakeholder workshop during the American Transplant Congress (Chicago) with over 60 patients, caregivers, and health professionals on graft loss and life participation – two of the SONG-Tx core outcomes. The discussions were fascinating and challenging! Measuring graft loss and life participation is not as simple as one might expect. A workshop report will be drafted, and the input and insights gained will be used to develop core outcome measures. Click here to see the full set of SONG-Tx core outcomes.|
|SONG-KIDS CHILDREN AND ADOLESCENTS||“It sounds like they took a cold medical approach where here it’s more personal, there’s shared experience, there’s more heart that’s been put onto those outcomes”
Mother of a child with chronic kidney disease
In our review just published in the Journal of Pediatrics, blood pressure, kidney function and infection were found to be the most frequently reported outcomes in trials in children with chronic kidney disease. However, focus groups with 26 children and 44 parents in the US, Canada and Australia revealed different priorities. For kids, physical activity, kidney function and fatigue were the top priorities, and kidney function, weight gain and survival were the top priorities for parents. These preliminary results were presented at the International Paediatric Nephrology Association Workshop in Heidelberg, Germany in May 2017.
Next year, we will be launching a worldwide Delphi survey. Please click here to register for the SONG-Kids Delphi survey. Every response counts!
|SONG-PD PERITONEAL DIALYSIS||Over 100 patients on peritoneal dialysis and their caregivers from four cities in the United States (Los Angeles) and Australia (Sydney, Melbourne, Canada) have participated in the SONG-PD focus groups. Lots of patient-important outcomes have been suggested including PD related infection, energy, flexibility with time and ability to travel. Soon, we will be heading to Hong Kong to conduct a final round of focus groups.
We are now getting ready to launch the SONG-PD Delphi Survey in September this year! Please click here to register for the survey if you want to have your say on outcomes to include in research in peritoneal dialysis.
|SONG-PKD POLYCYSTIC KIDNEY DISEASE||SONG-PKD kicked off this month with Gopala Rangan (The University of Sydney, Australia) as Chair of the Steering Group. The first round of focus groups are now underway in Australia. Lots more to come, watch this space!|
IN OTHER NEWS
A whirlwind of awards and presentations!
Congratulations to everyone who won awards this year for SONG-related projects including:
SONG-related projects have also been presented at various conferences worldwide:
SONG Executive Committee | Jonathan Craig (Chair), Angela Wang, Braden Manns, Brenda Hemmelgarn, David Wheeler, John Gill, Peter Tugwell, Roberto Pecoits-Filho, Sally Crowe, Tess Harris, Wim Van Biesen, Wolfgang Winkelmayer, Allison Tong.
SONG Coordinating Committee | Amy Kelly, Andrea Viecelli, Angela Ju, Angelique Ralph, Armando Teixeira-Pinto, Benedicte Sautenet, Camilla Hanson, Daniel Sumpton, Emma O’Lone, Gaya Raman, Karine Manera, Lorraine Hamiwka, Martin Howell, Nicole Evangelidis, Richard McGee, Talia Gutman, Yeoungjee Cho.
Please see the website for members of the Steering Groups (SONG-HD, SONG-Tx, SONG-Kids, SONG-PD, SONG-PKD), Expert Working Groups, and Investigators.
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