Journal article

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

Camilla S Hanson, Jonathan C Craig, Charlotte Logeman, Aditi Sinha, Allison Dart, Allison A Eddy, Chandana Guha, Debbie S Gipson, Detlef Bockenhauer, Hui-Kim Yap, Jaap Groothoff, Michael Zappitelli, Nicholas JA Webb, Stephen Alexander, Susan L Furth, Susan Samuel, Alicia Neu, Andrea K Viecelli, Angela Ju, Ankit Sharma Show all

Kidney International | ELSEVIER SCIENCE INC | Published : 2020

Abstract

Trials in children with chronic kidney disease 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 2 consensus workshops in San Diego, California (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 t..

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Grants

Awarded by National Health and Medical Research Council (NHMRC) Program Grant Better Evidence and Translation in Chronic Kidney Disease (BEAT-CKD)


Awarded by NHMRC Program


Awarded by NHMRC Fellowship


Awarded by NHMRC Postgraduate Scholarship


Funding Acknowledgements

The study was funded by The University of Sydney Research Accelerator Grant and the National Health and Medical Research Council (NHMRC) Program Grant Better Evidence and Translation in Chronic Kidney Disease (BEAT-CKD) (ID 1092957). CSH is supported by the NHMRC Program (grant ID1092957). AT is supported by a NHMRC Fellowship (ID 1106716). SAC is supported by the NHMRC Postgraduate Scholarship (ID 1168994). AKV is supported by a Jacquot Research Establishment Fellowship and a Princess Alexandra Research Foundation grant. EHA is supported by a NHMRC Postgraduate Scholarship (ID 1168606) and a Royal Australian College of Physicians Jacquot NHMRC Award for Excellence. TG is supported by a NHMRC Postgraduate Scholarship (ID 1169149).The authors thank the International Society of Nephrology for supporting the SONG-Kids Consensus workshop at the World Congress of Nephrology on April, 13, 2019, in Melbourne, Australia. We acknowledge, with permission, all the attendees listed in the Appendix who attended the consensus workshops.