Category Archives: Song News

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  SONG E-Newsletter June 2017 Edition

  Posted on July 19, 2017 by admin in Song News.

  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 […]

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  E-newsletter December 2016

  Posted on December 16, 2016 by admin in Song News.

  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, […]

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• SONG Workshops in Chicago 2016

  Posted on December 4, 2016 by admin in Song News.

  “Outstanding sessions enriched by the patient engagement.” – workshop participant Two SONG-HD workshops were held 18th-19th November 2016 during the American Society of Nephrology Kidney Week in Chicago. Patients, caregivers, and health professionals came together to discuss core outcome measures for vascular access and fatigue, to be used in all trials in haemodiaysis. We thank […]

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  E-newsletter 01 September 2016

  Posted on September 19, 2016 by admin in Song News.

  Welcome to our first edition of the SONG Initiative e-newsletter. Click on the link to get an update on core outcomes, activities, and ways to get involved.

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• SONG-Tx Boston workshop

  Posted on June 15, 2016 by admin in Song News.

  The workshop brought together 68 patients, family members, and health professionals who engaged in very interesting discussions about establishing core outcomes to be reported in trials in kidney transplantation. A brief report and photos are available here.

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• Patients and caregivers tell us what outcomes are important in haemodialysis

  Posted on May 24, 2016 by admin in Song News.

  What were the top 5? Fatigue/energy,  survival (defined by patients as resilience and coping, ability to travel, dialysis-free time, impact on family, and ability to work. Full article in the American Journal of Kidney Disease now published online.

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• SONG-Tx Delphi is now closed with 1018 members on the panel

  Posted on April 12, 2016 by admin in Song News.

  A massive thank you to the 1018 people who completed Round 1. Analysis and preparation is now underway for Round 2.

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• SONG-Tx Delphi has gone live

  Posted on March 5, 2016 by admin in Song News.

  Almost one week since launch and 400 have completed Round 1. You can still join – just register here.

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• Registration for the SONG-Tx Delphi is now OPEN

  Posted on January 23, 2016 by admin in Song News.

  Join the panel to have your say on what outcomes are important for kidney transplantation research! Your involvement is important to help ensure that kidney transplantation research includes outcomes that are important to you. Register here.

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• SONG-HD findings presented at the Annual CMS Quality Conference in Baltimore

  Posted on December 12, 2015 by admin in Song News.

  David Rosenbloom presents findings at the Annual CMS Quality Conference in Baltimore. Read his inspiring blog here: The SONG-HD Initiative: It’s not the same old song, and it’s got a very different meaning.

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