SONG-PKD

“There isn’t an actual drug or treatment to treat [polycystic kidney disease] PKD, it’s about taking control as well. I felt very out of control and not able to do anything to fix it. So there needs to be a way of helping that stress and anxiety.” – patient with PKD

Why develop core outcomes in polycystic kidney disease?

Polycystic kidney disease (PKD) affects approximately 12 million people worldwide. PKD is an irreversible life-threatening genetic disorder and is a major cause of end-stage kidney disease. Research in PKD aims to improve outcomes for patients yet they are rarely involved in outcome selection.

Identifying core outcomes

The standardised outcomes in nephrology – polycystic kidney disease (SONG-PKD) project will establish core outcomes that are based on the shared priorities of patients with PKD, their family members, clinicians, researchers, and policy makers. Eight focus groups using nominal group technique will be conducted with patients with PKD and their caregivers who will be asked to identify and rank outcomes that are important to them, and describe reasons underpinning their priorities. An international Delphi consensus survey will conducted with stakeholders, including patients, caregivers, and health professionals, to distil and generate a prioritised list of “core outcomes” to include in trials, other forms of research and clinical care.

SONG-PKD will establish a new core outcome set in PKD. This will help to ensure that research is measuring and reporting outcomes that are meaningful and relevant to patients with PKD, their family, and clinicians; to improve patient-centred care for people living with PKD.

SONG-PKD Steering Group

Gopala Rangan (Chair) | The University of Sydney, Australia
Albert Ong | University of Sheffield, United Kingdom
Arlene Chapman | University of Chicago, United States
Curie Ahn | Seoul National University Hospital, South Korea
Dongping Chen | The Second Military Medical University, China
Helen Coolican | PKD Foundation of Australia, Australia
Juliana Tze-Wah Kao | National Taiwan University Hospital, Taiwan
Ron Gansevoort | University Medical Center Groningen, Netherlands
Ronald Perrone | Tufts Medical Center, United States
Tess Harris | PKD International, United Kingdom
Vicente Torres | Mayo Clinic, United States
York Pei | University of Toronto, Canada

Project coordinators: Yeoungjee Cho, University of Queensland; Benedicte Sautenet, University of Tours

Project updates

SONG-PKD commenced in June 2017. Focus groups and interviews are getting underway in Australia.