Welcome to the website of the ESPN/ERA Registry

What we do

The European Society for Paediatric Nephrology (ESPN)/ European Renal Association (ERA) Registry is a European Registry collecting data on paediatric patients on kidney replacement therapy (KRT) (i.e. dialysis and kidney transplantation) in Europe. As kidney failure requiring KRT in children and young adults is considered a rare disease, single country data may be underpowered to show differences or effects of treatment. Therefore collaboration between countries is essential to improve outcomes of children with kidney failure. Since 2007, the ESPN/ERA Registry provides a collaborative platform, prospectively collecting data on all European children treated with KRT. Resulting information is distributed through annual reports, scientific publications, presented at (inter)national congress and through this website.

The ESPN/ERA Registry is funded by the ERA and is housed in the Department of Medical Informatics in Amsterdam University Medical Centers (location AMC) in Amsterdam, the Netherlands. The ESPN/ERA Registry is certified according to the ISO 9001:2015 standards on quality management system, and according to the ISO 27001:2013 standards on information security management system. Both certificates were provided by Lloyd's Register Quality Assurance.

Objectives

The ESPN/ERA Registry aims to improve the quality of and equal access to care for all European children with kidney failure. By providing detailed standardised high-quality data and benchmarking figures of treatments and their outcomes, as well as on health inequalities in access to dialysis, kidney transplantation, and medication practice, and rare kidney diseases, the ESPN/ERA Registry helps to identify best practice and evidence-based policies in paediatric kidney failure.

Our successful internship programme encourages cooperation of clinicians and scientists across Europe to increase cross-border medical and scientific expertise.

KRT data collection

The ESPN/ERA Registry collects data on paediatric KRT at an annual basis via the national and regional renal registries in Europe. To achieve the same data are collected in all countries, but also to stimulate data collection, we made a prioritization for suggested data collection, based on 2 levels, which are explained in more detail below. An internet-based data collection tool to enter data is available here.

Baseline or essential data are, as the word suggests, critical and required for every patient. These data include the patient's month and year of birth, sex, cause of kidney failure, date and type of first kidney replacement therapy (KRT), history of KRT with dates and modality changes, date and cause of death, and transfers to and from other countries or registries.

Extended data are highly preferred data, but not essential for participation in the Registry. However, we highly recommend collection of these variables. Examples of extended data are comorbidities, serum creatinine levels, weight and height.

After retrieval of the data, feedback concerning inconsistencies in the data is provided to the national and regional registries. Furthermore a country report including benchmarking data is shared with the national and regional registries.

Data can be contributed to the ESPN/ERA Registry via existing (national) registries, or via the internet- based data collection system. If you would like to receive more information on participation in the Registry or to receive an entrance code to the internet-based data collection environment, please contact us via espn-reg@amc.uva.nl.

The annual report including 2022 paediatric data	The new ESPN/ERA Registry newsletter is online.