SONG-GD
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.
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
Hernán Trimarchi | Hospital Británico de Buenos Aires, Argentina
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:
- 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)
- focus groups with patients with glomerular disease and caregivers to identify outcomes that are relevant and important to them
- interviews with health professionals involved in the care of patients with glomerular disease
- a Delphi survey with patients, caregivers, clinicians, researchers, policy makers, members from industry to develop consensus on important outcome domains
- 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 people with glomerular disease and their family members/caregivers?
Focus groups have been conducted in Australia, United States, United Kingdom, and Hong Kong. The report has been completed.
Delphi Survey – what outcomes matter to most to patients, families, and health professionals?
The Delphi Survey has been completed in English and Chinese languages.
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
SONG-GD Washington DC Consensus Workshop 2
We held the 2nd SONG-GD Consensus Workshop on Saturday November 9th during ASN Kidney Week 2019 in Washington DC. There were 88 participants including 30 patients and caregivers from the United States and 58 healthcare professionals from 12 countries. We reviewed the findings of the focus groups and Delphi surveys (English and Chinese) so far, then discussed the outcomes being considered for the core outcome set in adult glomerular disease.
We would like to thank the following people who attended and contributed at the workshop: Adrian Liew, Agnes Estorninos, Alice Smith, Allison Tong, Amanda Baumgart, Amy Earley, Andrea Viecelli, Angela Yee-Moon Wang, Barbara Gillespie, Bernie Lorenz, Brad Rovin, Brett Love, Carlton Walton, Charlotte Logeman, Christina Orefice, Dan Cattran, Dawn Caster, David Jayne, David Johnson, Deb Gipson, Denis Fouque, Duvuru Geetha, Dwuan June, Elisabet Bjanes, Emma O’Lone, Emma Palitz, Eric Au, Erin Kahle, Frank Cortazar, Heather Beanlands, Gary Orefice, Imani Mintz, Jack Wetzels, James Ryan, Jasmine Lewis, Jane Ryan, Jenna Norton, Jerica Gerena, Jocelyn Lorenz, Jon Barratt, John Boletis, Johnnie Walker, Jonathan Craig, Jonathan Hogan, Juan Mejia-Vilet, Jürgen Floege, Kathy Machuzak, Kelly Burdge, Kirk Campbell, Krassimir Mitchev, Laura Mariani, Laura Walker, Lauren Lee, Laurence Beck, Liz Lightstone, Lonnell Lewis, Lynette Saar, Mark Uknis, Martin Wilkie, Melissa Nataatmadja, Michael Mittelman, Michelle Hladunewich, Michelle Tarver, Nicole Scholes-Robertson, Oliver Bradshaw, Pam Duquette, Patrick Nachman, Pearl Lin, Rajnish Mehrohtra, Rebecca Cook, Richard Glassock, Richard Kitching, Robert Huizinga, Rosie Love, Ryan Estorninos, Samaya Anumudu, Sanjiv Choudhary, Sean Barbour, Sharon Adler, Simon Carter, Simpy Sanjiv, Stephen Seliger, Susan Shaffer, Sydney Tang, Talia Katz, Vladimir Tesar, Wenrui Hao, William Saar
