The first year of the new ERA–EDTA Registry

A newsletter in last September's issue of Nephrology Dialysis Transplantation gave details of the decision to move the Registry from London to the Academic Medical Centre (AMC) in Amsterdam. The new philosophy of the Registry was also described. In summary, the work of the Registry would be along two lines. Firstly, core data would be obtained from the national and some of the larger regional registries to provide demographic information on all the dialysis and transplant patients in the areas covered by these registries. Secondly, sampling methods would be developed to enable more detailed information to be obtained about cohorts of patients in order to answer specific questions. A contract was signed between the AMC and the ERA–EDTA at the end of May 2000. The Registry began work immediately and completed its first analysis in time to present it at the ERA–EDTA Annual Congress in September 2000 in Nice. This analysis consisted of demographic information from six European registries and the main purpose of this pilot study was to develop and test the system of data transfer and analysis. This would enable any problems to be resolved before the collaboration was extended to more of the European registries. In practice, no major obstacles were encountered, although some problems arose from the differences in coding systems used by the contributing registries. Since the congress in Nice, collaboration has been extended to registries in a further five countries and it is anticipated that an expanded and updated demographic analysis will be ready for presentation at the 2001 ERA–EDTA congress in Vienna.