Contributors: The University of Sydney; Westmead Hospital Sydney; MethodS in Patients-centered outcomes and HEalth ResEarch (SPHERE); Université de Tours (UT)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Université de Nantes - UFR des Sciences Pharmaceutiques et Biologiques; Université de Nantes (UN)-Université de Nantes (UN); Service de néphrologie et immunologie clinique CHRU Tours; Centre Hospitalier Régional Universitaire de Tours (CHRU Tours); Instituto Nacional de Cardiologia Ignacio Chavez; Université de Yaoundé I (UY1); Hospital Universitario de Guadalajara; Department of Medicine, Kidney Research Institute, University of Washington; Kidney Research Institute Seattle (KRI); Princess Margaret Hospital, Hong Kong; Federacion Nacional ALCER (Spanish Kidney Patient's Federation); Tufts University School of Medicine Boston; University of British Columbia (UBC); Hospital Salvador; University of Cape Town; University of Alberta; Défaillance Cardiovasculaire Aiguë et Chronique (DCAC); Centre Hospitalier Régional Universitaire de Nancy (CHRU Nancy)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Université de Lorraine (UL); Centre d'investigation clinique plurithématique Pierre Drouin Nancy (CIC-P); Centre d'investigation clinique Nancy (CIC); Centre Hospitalier Régional Universitaire de Nancy (CHRU Nancy)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Université de Lorraine (UL)-Centre Hospitalier Régional Universitaire de Nancy (CHRU Nancy)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Université de Lorraine (UL); Cardiovascular and Renal Clinical Trialists Vandoeuvre-les-Nancy (INI-CRCT); Institut Lorrain du Coeur et des Vaisseaux Louis Mathieu Nancy; French-Clinical Research Infrastructure Network - F-CRIN Paris (Cardiovascular & Renal Clinical Trialists - CRCT ); Dialysis Unit, CASMU-IAMPP, Montevideo; University of New South Wales Sydney (UNSW); Centre for Nephrology, UCL Medical School; Translational Research Institute; University College of London London (UCL); The University of Queensland (UQ All campuses : Brisbane, Dutton Park Gatton, Herston, St Lucia and other locations ); Princess Alexandra Hospital, Brisbane; Baylor College of Medecine; Sheffield Children's NHS Foundation Trust; Flinders University Adelaide, Australia; This project is supported by the National Health and Medical Research Council (NHMRC) Program Grant 1092597. NE is supported by the National Health and Medical Research Council (NHMRC) Program Grant 1092597. AT is supported by The University of Sydney Robinson Fellowship. YC is supported by the NHMRC Early Career Fellowship 1126256. AV is supported by a Jacquot Research Establishment Fellowship. The funding bodies do not have a role in the design, collection, analysis, and interpretation of data; in the writing of the manuscript; and in the decision to submit the manuscript for publication.
نبذة مختصرة : International audience ; 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.
Processing Request
No Comments.