Mathilde Cardous-Ubbink (epidemiologist) will work part time to run this ESPN Registry in close collaboration with Jane Tizard and Enrico Verrina (both paediatric nephrologists and ERA-EDTA Registry Committee members) and Paul van Dijk and Kitty Jager (ERA-EDTA Registry staff members). Until recently paediatric data have been obtained from 12 relatively small national and regional ‘adult’ RRT registries. In addition, a more detailed comparison of the UK and Italy has been reported. A recent survey by the ESPN Registry revealed that nephrologists collecting paediatric data at a national basis from 8 additional large countries were willing to contribute their more extensive data to a European paediatric database. Currently, an inventory is being made to see how many patients are in those registries, over which time period and which data are being collected, how often and which methods are used to determine laboratory values and which coding systems (especially for the Primary Renal Disease) are being used. In consultation with these paediatric registries, the second step will be to define a core paediatric data set with specific paediatric items (e.g. data on growth and pubertal development) that will need to be collected from all these registries. These core data will be reported on an annual basis. In addition, special multicenter studies on specific paediatric research subjects can be initiated and run within this network of paediatric registries. All interested nephrologists and registry representatives are kindly encouraged to send us proposals for research questions.

ESPN Registry activities and information on paediatric registries in general will be provided at the new ESPN Registry website (www.espn-reg.org) to facilitate the exchange of information.
We hope that the ESPN 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.

Enrico Verrina and Jane Tizard, ESPN representatives in the ERA-EDTA Registry