ESPN/ERA-EDTA Registry

European Registry for Children on Renal Replacement Therapy

 

European Society for Paediatric Nephrology
European Renal Association - European Dialysis and Transplant Association
Department of Medical Informatics
Academic Medical Center
European Union

About us

Established renal failure (ERF) 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 cooperation between countries is essential to improve the outcome of children with ERF. Until 2007 data collection on children and young adults on renal replacement therapy (RRT) in Europe was limited to that of the European Renal Association- European Dialysis and Transplant (ERA-EDTA) Registry. Within the ERA-EDTA 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 renal failure management. As the coordination and the data collection, management and analysis of such a project would require a disproportionate amount of ERA-EDTA 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, permission was asked from the ERA-EDTA at the end of 2008 to make the official name the "ESPN/ERA-EDTA Registry". An epidemiologist was appointed to work with the AMC team and the two ESPN representatives on the ERA-EDTA Registry committee. In 2014, 38 paediatric registries contributed data to the ESPN/ERA-EDTA 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 of data contributed. The authorship list is continuously updated based on these rules and the 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 25 different countries have contributed to the various papers.

We hope that the ESPN/ERA-EDTA Registry will further increase the amount and the quality of paediatric RRT data and will lead to high quality collaborative European research projects to improve paediatric ESRD patient care.