SONG
Research type
Research Study
Full title
Standardised Outcomes in Nephrology – Chronic Kidney Disease
IRAS ID
247081
Contact name
Martin Wilkie
Contact email
Sponsor organisation
University of Sydney
Duration of Study in the UK
0 years, 1 months, 2 days
Research summary
Summary of Research
This study uses nominal groups of patients with chronic kidney disease and their caregivers (including family members) to identify and rank outcomes that they consider are important to include in clinical trials and to discuss reasons for their choices. The nominal group technique, which is being used, is highly recommended as a transparent, equitable, and systematic approach to generate ideas and consensus on priorities in health – including outcomes in chronic kidney disease, and allows each participant to raise their views and suggestions without direct rejection or criticism from others in the group.
The study is part of a programme entitled Standardised Outcomes in Nephrology http://songinitiative.org/ the has the objective of making research relevant to patients, caregivers and clinicians by exploring those outcomes that are considered to be important by those groups. This part of the work (SONG-GN) is for people with Chronic Kidney Disease who have glomerulonephritis as their underlying diagnosis. This work is being lead by the University of Sydney and is working internationally.
Summary of Results
Patients and caregivers gave highest priority to the outcomes of kidney function, mortality, and need for dialysis or transplant. Importantly, they also highly prioritized patient-reported outcomes, such as life participation and fatigue, that are less well reported. Involving patients and caregivers in establishing outcomes to be reported in research can strengthen a patient-centered evidence base that supports shared decision making and better outcomes for patients with glomerular disease.
REC name
West of Scotland REC 3
REC reference
18/WS/0084
Date of REC Opinion
31 May 2018
REC opinion
Further Information Favourable Opinion