Omitting outcomes of importance to patients with chronic kidney disease (CKD) and their
caregivers from trials can impede decision-making based on patient-centered outcomes. As
part of the global Standardized Outcomes in Nephrology – Chronic Kidney Disease (SONG
CKD) initiative, we aimed to establish a consensus-based set of core outcomes for trials in
CKD (prior to the need for kidney replacement therapy). To finalize the proposed set of core
outcomes that were identified through focus groups and an international Delphi survey, we
convened two international stakeholder workshops in English and Spanish languages that
involved 61 patients/caregivers and 75 health professionals from 18 countries. Participants
were asked to discuss and endorse the potential core outcomes (mortality, kidney function,
life participation, and cardiovascular disease), and to provide suggestions for implementing
the core outcomes. The discussions were summarized into four themes: reflecting a
comprehensive approach to health, facilitating patient empowerment in their own care,
ensuring applicability to broad geographic areas and populations, and feasibility for
implementation. Patients, caregivers, and health professionals agreed that mortality, kidney
function, life participation and cardiovascular disease should be established as core outcomes
for trials in CKD.
Andrea Matus Gonzalez, Rosanna Cazzolli, Nicole Evangelidis, Benedicte Sautenet, Yeoungjee Cho, Laura Cortes Sanabria, Jonathan C. Craig, Ian H. de Boer, Samuel Fung, Daniel Gallego, Chandana Guha, Jenny I. Shen, Andrew S. Levey, Adeera Levin, Eduardo Lorca, Sebastian Cabrera, Haydee Mellado, Soledad Molina, Ximena Atilano, Lorena Sandino, Macarena Arancibia, Alejandro Sepulveda, Marcelo Urra, Maria de los Angeles Bravo, Karine Manera, Javier Recabarren, Ikechi G. Okpechi, Patrick Rossignol, Nicole Scholes-Robertson, Laura Sola, Armando Teixeira-Pinto, Tim Usherwood, Andrea K. Viecelli, David C. Wheeler, Katherine Widders, Allison Jaure
Disease Category: Kidney disease
Disease Name: Chronic kidney disease
Age Range: 18 - 120
Sex: Either
Nature of Intervention: Any
- Recommendations made
- Semi structured discussion