SONG-GD

The SONG-GD Survey is now live!

Glomerular Disease (glomerulonephritis) is a group of diseases that injure the part of the kidney that filters blood (called glomeruli). Other terms you may hear used are nephritis and nephrotic syndrome. We will be conducting an international survey to ask about what impacts of treatment and disease are important to you – outcomes that you think should be reported in research in people with glomerular disease.

<<CLICK HERE TO JOIN THE DELPHI PANEL!>>

SONG-GD Steering Group

Liz Lightstone (Co-Chair) | Imperial College London, United Kingdom
Dan Cattran (Co-Chair) | University of Toronto, Canada
Ana Malvar | Hospital Fernandez, Argentina
Arvind Bagga | All India Institute of Medical Sciences
Brad Rovin | Ohio State University, United States
Dawn Caster | University of Louisville, United States
Fernando Fervenza | Mayo Clinic, United States
Hong Zhang | Peking University First Hospital, China
Jai Radhakrishnan | Columbia University Medical Center, United States
John Boletis | University of Athens, Greece
Jonathan Barratt | University of Leicester, United Kingdom
Jonathan Hogan | University of Pennsylvania, United States
Jürgen Floege | Aachen University, Germany
Michelle Hladunewich | University of Toronto, Canada
Nicole Scholes-Robertson | University of Sydney, Australia
Richard Kitching | Monash University, Australia
Richard Lafayette | Stanford University, United States
Rosanna Coppo | Regina Margherita Hospital, Italy
Sean Barbour | University of British Columbia, Canada

Project coordinator: Simon Carter, The University of Sydney

Identifying core outcomes domains

SONG-GD involves 5-phases:

  1. a systematic review to identify outcomes that have been reported in trials involving children with chronic kidney disease (including pre-dialysis, dialysis, and kidney transplantation)
  2. focus groups with  patients with glomerular disease and caregivers to identify outcomes that are relevant and important to them
  3. interviews with health professionals involved in the care of patients with glomerular disease
  4. a Delphi survey with patients, caregivers, clinicians, researchers, policy makers, members from industry to develop consensus on important outcome domains
  5. consensus workshops to review and establish a core outcome domain set for trials in patients with glomerular disease

Project updates

Focus groups – what outcomes matter to kids with CKD and family members?

Focus groups have been conducted in Australia, United States and Hong Kong. We are currently analysing the results.

Delphi Survey – what outcomes matter to most to patients, families, and health professionals?

The Delphi Survey is now open and will be available in English and Chinese languages. The link is available above.

SONG-GD Melbourne Consensus Workshop 1

The first SONG-GD consensus workshop was held on the 13th April 2019 during the World Congress of Nephrology. This workshop brought together patients, caregivers and health professionals to discuss the early findings from the SONG-GD Delphi survey, and ideas about how to establish the core outcome set.