Join the SONG-PKD Delphi Panel to help agree the outcomes which should be included in future ADPKD research.
Outcomes are the measurable effects that a treatment has on a patient. This can be a drug or other therapeutic intervention. The global SONG initiative is developing a number of core outcomes in kidney disease which all stakeholders doing research agree are critically important to measure and report in all studies and trials.
Using core outcomes means that trial results can be easily compared. They can also be used in guidelines to help patients, families, and their clinicians make informed decisions about treatments.
SONG-PKD will establish core outcomes for future ADPKD research. Often patients are not involved outcome selection. SONG-PKD core outcomes will be based on the shared priorities of patients with ADPKD and their family members, plus other stakeholders such as clinicians, researchers, regulators and policy makers.
Patients, family members, carers and health professionals are all invited to join the internatational Delphi panel to rank the most important outcomes for research.
The survey will be online in two rounds. Each round takes 10-15 minutes.