The Standardised Outcomes in Nephrology-Haemodialysis (SONG-HD) study aims to establish a core outcome set for haemodialysis [hemodialysis] trials, to improve the quality of reporting, and the relevance of trials conducted in people on haemodialysis.
Protocol: http://www.trialsjournal.com/content/16/1/364
Study website: www.songinitiative.org
Principal Investigators:
Jonathan C Craig (Chair) 1,2, Allison Tong1,2, Braden Manns3, Brenda Hemmelgarn3, David C Wheeler4, Peter Tugwell5 , Wolfgang C Winkelmayer6, Wim van Biesen7, Sally Crowe8, and Tess Harris9,10
1 Sydney School of Public Health, The University of Sydney, Sydney, Australia
2 Centre for Kidney Research, The Children’s Hospital at Westmead, Westmead, Sydney, Australia
3 Departments of Medicine and Community Health Sciences; Libin Cardiovascular Institute and O’Brien Institute of Public Health, University of Calgary, Calgary, Canada
4 Centre for Nephrology, University College London, London, United Kingdom
5 Department of Medicine, University of Ottawa, Ottawa, Canada
6 Section of Nephrology, Baylor College of Medicine, Houston, United States
7 Renal Division, Ghent University Hospital, Ghent, Belgium
8 Crowe Associates Ltd, Oxfordshire, United Kingdom
9 PKD International, Geneva, Switzerland
10 UK Polycystic Kidney Disease Charity, London, United Kingdom
Disease Category: Kidney disease
Disease Name: Chronic kidney disease
Age Range: 18 - 100
Sex: Either
Nature of Intervention: Procedure
- Charities
- Clinical experts
- Conference participants
- Consumers (caregivers)
- Consumers (patients)
- Governmental agencies
- Guideline developers
- Patient/ support group representatives
- Pharmaceutical industry representatives
- Policy makers
- Researchers
- COS for clinical trials or clinical research
- COS for practice
- Recommendations for outcome measures (measurement/how)
- Consensus conference
- Delphi process
- Focus group(s)
- Interview
- Nominal group technique (NGT)
- Systematic review
SONG-HD is a five-phase project that includes the following: a systematic review to identify outcomes that have been reported in haemodialysis systematic reviews and trials; nominal group technique with patients and caregivers to identify, rank, and describe reasons for their choices; qualitative stakeholder interviews with patients, caregivers, clinicians, researchers, and policy makers to elicit individual values and perspectives on outcomes for haemodialysis trials; a three-round Delphi survey with stakeholder groups to distil and generate a prioritised list of core outcomes; and a consensus workshop to establish a core outcome set for haemodialysis trials.