The strengths and complexities of European registries concerning paediatric kidney transplantation health care.

ABSTRACT:

Introduction

Patient data are increasingly available in (multi)national registries, especially for rare diseases. This study aims to provide an overview of current European registries of paediatric kidney transplantation (PKT) care, their coverage, and their focus. Based on these data, we assess whether the current status is optimal for achieving our common goal: the optimalisation of health care.

Methods

A list of all PKT centres within the European Union (EU) as well as active PKT registries was compiled using existing literature and the European Platform on Rare Disease Registration. Registry staff members were contacted to obtain information about the parameters collected and the registry design. These data were compared between registries.

Results

In total, 109 P

SUBMITTER: Oomen L 

PROVIDER: S-EPMC10073744 | biostudies-literature | 2023

REPOSITORIES: biostudies-literature