A snapshot of European registries on chronic kidney disease patients not on kidney replacement therapy

Abstract

BACKGROUND

Traditionally, renal registries collect and report population-based epidemiological data on patients with kidney failure who are treated by kidney replacement therapy (KRT), i.e. dialysis or transplantation. Over the past decade, a number of these registries have started to widen the inclusion of patients to those with kidney failure treated with comprehensive conservative management and in some cases to earlier stages of chronic kidney disease (CKD), leading to, for example, CKD Stages 4–5 registries. As a result, they are increasing their value by not only providing numbers on those receiving or refraining from extremely expensive therapies, but also to stages of CKD in which kidney failure may still be prevented.

The European Renal Association (ERA) Registry currently collects data on patients treated by KRT and uses them for comparison and collaborative research. In this article we report the current status of CKD registries in Europe in relation to their data collection on patients not on KRT so that in the future we may investigate to what extent their data may be used for similar purposes, such as collaborative research on CKD trajectories and patient outcomes.