Establishing core outcome domains in pediatric kidney disease: report of the Standardized Outcomes in Nephrology - Children and Adolescents (SONG-KIDS) consensus workshops.

Abstract Trials in children with chronic kidney disease (CKD) do not consistently report outcomes that are critically important to patients and caregivers. This can diminish the relevance and reliability of evidence for decision-making, limiting the implementation of results into practice and policy. As part of the Standardized Outcomes in Nephrology – Children and Adolescents (SONG-Kids) initiative, we convened two consensus workshops in San Diego, United States (7 patients, 24 caregivers, 43 health professionals; and Melbourne, Australia (7 patients, 23 caregivers, 49 health professionals). This report summarizes the discussions on the identification and implementation of the SONG-Kids core outcomes set. Four themes were identified; survival and life participation are common high priority goals, capturing the whole child and family, ensuring broad relevance across the patient journey, and requiring feasible and valid measures. Stakeholders supported the inclusion of mortality, infection, life participation and kidney function as the core outcomes domains for children with CKD.