[REIN: a tool at the service of the patients]

On the occasion of the 20th anniversary of the REIN (French Renal Epidemiology and Information Network), a summary work on the contributions of the national French ESKD register was carried out. On the issue of patients’ perspectives, the following key messages were retained. As shown by the SONG (Standardised Outcomes in Nephrology) initiative, the criteria for judging the dialysis treatment that patients and care-givers prefer are not those that are traditionally found in published studies. For example, for haemodialysis, they are fatigue, ability to travel, time without dialysis, impact on family and ability to work. The concern to give the patients a voice has been at the heart of the REIN registry right from the outset. In addition, there are patient representatives in the REIN Scientific Council and the Steering Group. Although mainly focused on quantitative health data collected from professionals, REIN has also supported studies pertaining to data collected directly from patients. These studies enable addressing questions pertaining to the problems faced by patients in their care pathway and their life with the disease. The setting up of a tool for routine and electronic collection of the patients’ point of view in the evaluation of their treatment and the support of patient-initiated research contribute to positioning the REIN as a partner tool at the service of patients, unique in France.