Standardised Outcomes in Nephrology – Chronic Kidney Disease (SONG-CKD): a protocol for establishing a core outcome set for adults with chronic kidney disease who do not require kidney replacement therapy - Université de Lorraine
Journal Articles Trials Year : 2021

Standardised Outcomes in Nephrology – Chronic Kidney Disease (SONG-CKD): a protocol for establishing a core outcome set for adults with chronic kidney disease who do not require kidney replacement therapy

1 The University of Sydney
2 Westmead Hospital [Sydney]
3 SPHERE - MethodS in Patients-centered outcomes and HEalth ResEarch
4 Service de néphrologie et immunologie clinique [CHRU Tours]
5 Instituto Nacional de Cardiologia Ignacio Chavez
6 UY1 - Université de Yaoundé I
7 Hospital Universitario de Guadalajara
8 Department of Medicine, Kidney Research Institute, University of Washington
9 KRI - Kidney Research Institute [Seattle]
10 Princess Margaret Hospital, Hong Kong
11 Federacion Nacional ALCER (Spanish Kidney Patient's Federation)
12 Tufts University School of Medicine [Boston]
13 UBC - University of British Columbia
14 Hospital Salvador
15 University of Cape Town
16 University of Alberta
17 DCAC - Défaillance Cardiovasculaire Aiguë et Chronique
18 CIC-P - Centre d'investigation clinique plurithématique Pierre Drouin [Nancy]
19 INI-CRCT - Cardiovascular and Renal Clinical Trialists [Vandoeuvre-les-Nancy]
20 Cardiovascular & Renal Clinical Trialists - CRCT - French-Clinical Research Infrastructure Network - F-CRIN [Paris]
21 Dialysis Unit, CASMU-IAMPP, Montevideo
22 UNSW - University of New South Wales [Sydney]
23 Centre for Nephrology, UCL Medical School
24 Translational Research Institute
25 UCL - University College of London [London]
26 UQ [All campuses : Brisbane, Dutton Park Gatton, Herston, St Lucia and other locations] - The University of Queensland
27 Princess Alexandra Hospital, Brisbane
28 Baylor College of Medecine
29 Sheffield Children's NHS Foundation Trust
30 Flinders University [Adelaide, Australia]
Eduardo Lorca
  • Function : Author

Abstract

Abstract Background Globally, over 1.2 million people die from chronic kidney disease (CKD) every year. Patients with CKD are up to 10 times more likely to die prematurely than progress to kidney failure requiring kidney replacement therapy. The burden of symptoms and impaired quality of life in CKD may be compounded by comorbidities and treatment side effects. However, patient-important outcomes remain inconsistently and infrequently reported in trials in patients with CKD, which can limit evidence-informed decision-making. The Standardised Outcomes in Nephrology – Chronic Kidney Disease (SONG-CKD) aims to establish a consensus-based core outcome set for trials in patients with CKD not yet requiring kidney replacement therapy to ensure outcomes of relevance to patients, caregivers and health professionals are consistently reported in trials. Methods SONG-CKD involves four phases: a systematic review to identify outcomes (domains and measures) that have been reported in randomised controlled trials involving adults with CKD who do not require kidney replacement therapy; stakeholder key informant interviews with health professionals involved in the care of adults with CKD to ascertain their views on establishing core outcomes in CKD; an international two-round online Delphi survey with patients, caregivers, clinicians, researchers, policy makers and industry representatives to obtain consensus on critically important outcome domains; and stakeholder consensus workshops to review and finalise the set of core outcome domains for trials in CKD. Discussion Establishing a core outcome set to be reported in trials in patients with CKD will enhance the relevance, transparency and impact of research to improve the lives of people with CKD.
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Dates and versions

hal-03355340 , version 1 (27-09-2021)

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Nicole Evangelidis, Benedicte Sautenet, Magdalena Madero, Allison Tong, Gloria Ashuntantang, et al.. Standardised Outcomes in Nephrology – Chronic Kidney Disease (SONG-CKD): a protocol for establishing a core outcome set for adults with chronic kidney disease who do not require kidney replacement therapy. Trials, 2021, 22 (1), pp.612. ⟨10.1186/s13063-021-05574-1⟩. ⟨hal-03355340⟩
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