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To mark twenty years of the REIN (French Renal Epidemiology and Information Network), a summary report on the contributions of the French national end-stage kidney disease (ESKD) registry was produced. On the perspectives of patients with end-stage kidney disease, a number of key takeaways were identified. As shown by the SONG (Standardised Outcomes in Nephrology) initiative, the criteria for judging the dialysis treatment that patients and caregivers prefer are not those that are traditionally found in published studies. For example, for hemodialysis, the relevant criteria are fatigue, ability to travel, time without dialysis, impact on family, and ability to work. The desire to give patients a voice has been central to the REIN registry right from the outset, and the REIN Scientific Council and Steering Group include patient representatives. Although mainly focused on quantitative health data collected from professionals, REIN has also been used to support studies of data collected directly from patients. These studies make it possible to address questions pertaining to the problems faced by patients in their care pathway and living with their disease. The introduction of a tool for routine and electronic collection of patient perspectives on evaluation of their treatment and the support of patient-initiated research have contributed to making the REIN an important partner tool for supporting patients, unique in France.© 2022 Société francophone de néphrologie, dialyse et transplantation. Published by Elsevier Masson SAS. All rights reserved.