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SONG E-Newsletter 2018 Edition
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 clinicians. Please read on for some of this year’s highlights.
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A NEW STREAM! SONG-GN GLOMERULONEPHRITIS“Tiredness and fatigue, that’s what really affects me on a daily basis”
Patient with GN
Earlier this year we started a new stream – SONG-GN (Glomerulonephritis). We have completed 16 focus groups with 132 patients and family members in four countries to begin the process of identifying which outcomes are most important for research in patients with GN.
Participants at the SONG-GN focus groups in the United Kingdom.
____________________________________________________________________________________________________ANOTHER CORE OUTCOME SET! SONG-PD PERITONEAL DIALYSIS
The SONG-PD consensus workshop was held at the 17th Congress of the International Society for Peritoneal Dialysis in Vancouver. Patients, family members and health professionals discussed and debated the results from the focus groups and online Delphi survey (~900 participants), to arrive at the core outcome set for PD including: PD-Infection, Cardiovascular Disease, Mortality, PD Failure and Life Participation.
_______________________________________________________________________________________Giving kids with CKD a voice: SONG-Kids Children and Adolescents
“Being alive is important. Most of us don’t like kidney disease. It’s sad. You have to experience surgeries, pain…most of us feel worried, scared.”
Young person with CKD
The wonderful young people who attended the SONG-Kids Workshop in San Diego.Over 80 children, parents, and health professionals attended the SONG-Kids workshop. We had interesting discussions about the different priorities across patients, family members and health professionals. The voices of the children gave us so much insight about their experience living with kidney disease and their desire to be included in important decisions that affect their care and their quality of life.
_______________________________________________________________________________________SONG-PKD Polycystic Kidney Disease
60 patients, family members and health professionals gathered to discuss important outcomes identified in the focus groups and Delphi survey for patients with PKD. Of note, participants engaged in rich discussions about pain in CKD, and the importance of validating their experiences of pain from early in the patient journey.
Attendees at the SONG-PKD Consensus workshop in San Diego.
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We really appreciate your involvement in this community effort to drive culture change, to help improve the relevance, certainty, and value of research for better care and outcomes in people living with kidney disease, and we look forward to continuing to work and collaborate with you in 2019.Our warmest wishes for a wonderful Christmas and New Year, from all of us at SONG!
