About us

Established kidney failure (EKF) in children and young adults is considered a rare disease. Single country data may be underpowered to show any differences or effects of treatment and therefore collaborating between countries is essential to improve the outcome of children with EKF. Until 2007 data collection on children and young adults on kidney replacement therapy (KRT) in Europe was limited to that of the European Renal Association (ERA) Registry. Within the ERA Registry data are collected from national and regional renal registries. As these do not always include paediatric patients, data on children have only been available from a limited part of Europe.

Since 2004 preparations have been made for an additional registry specifically focusing at children. It was decided that the data collection on children should be expanded not only to include more countries, but also to collect much more detailed data on different aspects of end stage kidney failure management. As the coordination and the data collection, management and analysis of such a project would require a disproportionate amount of ERA Registry staff time, in 2004 the AMC suggested that the ESPN should attempt to collect funds to appoint a part-time person to run a European paediatric registry. During its Congress in September 2005, the ESPN decided to allocate such funding to the AMC.

In 2007 the Registry was officially launched. To show the strong relationship and encourage collaboration between adult and paediatric nephrologists, at the end of 2008 permission was asked from the ERA to make the official name the "ESPN/ERA Registry". An epidemiologist was appointed to work with the AMC team and the two ESPN representatives became members of the ERA Registry committee. Until 2023, 41 different European countries have contributed with data to the ESPN/ERA Registry.

Furthermore, all countries are encouraged to participate in internships and research projects. With a large number of countries contributing data to the Registry, it is impossible to offer all contributors authorships on every paper. Therefore, we developed a fair and transparent system by which each country could indicate investigators with an interest and expertise for co-authorship on a certain number of papers, which was determined according to the amount and level of detail of the data contributed. The authorship list is continuously updated based on these rules and our publication plan. The authorship rules can be found here.

This mechanism of co-author selection resulted in enthusiastic and competent contributions to the various projects, and secured participation of contributors throughout Europe. So far, (paediatric) nephrologists from 37 different countries have contributed to the various papers.

We hope that the ESPN/ERA Registry will further increase the amount and the quality of paediatric KRT data and will lead to high quality collaborative European research projects to improve paediatric end-stage kidney disease patient care.