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.
Chinese version: 肾脏病学标准化结局指标研究（SONG）行动计划刚刚启动了SONG-GD肾小球疾病（肾小球肾炎）德尔菲调查（Delphi Survey），希望了解哪些疾病的结局指标对患者、看护人员和医疗人员来说更为关键。该调查的结果将用于确定在对肾小球疾病成年患者的研究中应该报告哪些核心结局指标。如果您是肾小球疾病患者或关注这种疾病，请点击以下链接加入德尔菲调查小组。<調查>
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
SONG-GD involves 5-phases:
Focus groups – what outcomes matter to people with glomerular disease and their family members/caregivers?
Focus groups have been conducted in Australia, United States, United Kingdom, 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. We now have over 1000 participants, with more than half being patients with glomerular disease! 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. The 67 attendees were from 16 countries and included patients, caregivers and health professionals – including representatives from the Australian Government Department of Health, who came together to discuss the early findings from the SONG-GD Delphi survey, and ideas about how to establish the core outcome set.
We thank the following people who attended the workshop: Adrian Liew, Allison Tong, Amanda Baumgart, Amelia Scott, Amelie Bernier-Jean, Andrea Viecelli, Andrew Burgess, Angela Ju, Ankit Sharma, Anton Kidric, Arvind Bagga, Barbara Gillespie, Benedicte Sautenet, Bhadran Bose, Brad Rovin, Brenda Hemmelgarn, Brendan Murphy, Bronwyn Woff, Chris Smith, Christopher de Zylva, Craig Settee, David Johnson, Elisabeth Hodson, Emma O’Lone, Eric Au, Gail Higgins, Ha Phan Hai An, Helen McClennan, Hong Zhang, Jai Radhakrishnan, Jessica Ryan, Jo Watson, John Boletis, Jonathan Craig, Jürgen Floege, Karolis Azukaitis, Kerry McNamara, Kevin Settee, Lany Trinh, Laurence Beck, Liz Lightstone, Louese Dunn, Mandy Kidric, Marilyn Lee, Martin Howell, Mary Smith, Matthew Roberts, Michelle Hladunewich, Nicki Scholes-Robertson, Paul Cavallo, Philip Li, Pierre Ronco, Rebecca Burgess, Robert Burgess, Robert Huizinga, Roberto Pecoits-Filho, Rosanna Coppo, Sean Barbour, Shilpa Jesudason, Simon Carter, Talia Gutman, Thilo von Groote, Tin Tran, Vladimir Tesar, Yeoungjee Cho