The first year of the new ERA–EDTA Registry

J. Douglas Briggs, Chairman of the ERA–EDTA Registry and Kitty Jager, Managing Director of the 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.

In addition to a demographic analysis, which will be presented each year, the Registry is now embarking on a number of other studies. These will have the aim of answering some specific questions both of a technical and scientific nature. The technical studies will look at such topics as the validity of the sampling methodology, data protection, and the systems used for coding primary renal disease and cause of death. It is widely agreed that the currently used coding systems are unsatisfactory. Keith Simpson from the Scottish Registry has been asked to examine and advise on this topic by the Board of the International Federation of Renal Registries (IFRR). Ronald Cornet from the ERA–EDTA Registry office will assist him in this task. Some of the scientific studies planned will be in the fields of type II diabetes, cardiovascular mortality, rare diseases, variations in survival on RRT, the child/adult interface, geographical distribution of disease and mortality, and treatment of the elderly.

In anticipation of an expanding workload, the Registry office will appoint an additional member of staff to assist with the data processing and analysis. This will take the staffing up to three full-time and two part-time members with in addition secretarial support. In order to provide financial support for the anticipated expansion in workload, discussions have taken place with some of the dialysis and pharmaceutical companies who have helped over the years to support the work of the ERA–EDTA. We have received an encouraging response from the companies.

It is important for the success of the Registry that expert advice is available to the members of staff in the office, and that there is good communication with the National Registries, the paediatric nephrology community, and the ERA–EDTA. To serve these needs a Registry Committee has now been established consisting of four representatives who were elected by the National Registries (Giuliano Colasanti, Terry Feest, Carola Grönhagen-Riska, and Keith Simpson), four ERA–EDTA council nominees (Douglas Briggs (Chairman), Hans-Jürgen Schober-Halstenberg, Bénédicte Stengel, and Dimitri Tsakiris), and two nominees from the European Society of Paediatric Nephrology (Bert van der Heijden and Kate Verrier-Jones).

For the past 3 years, those delegates to the annual ERA–EDTA Congress who have an association with registries have been invited to a meeting on the day of the opening ceremony. This meeting has consisted of a series of presentations on registry topics in the morning and a business meeting in the afternoon. A further meeting along these lines will take place on Sunday 24 June 2001 in the Congress Centre in Vienna. Further information about this meeting can be obtained from the ERA–EDTA Congress web-site (www.unipr.it/~eraedta) or from the Registry Office in Amsterdam. Delegates to the congress in Vienna who wish to attend the Registry meeting should apply by e-mail to the Registry office in Amsterdam. There is no registration fee, but space is limited.

The contact details of the Registry office are: ERA–EDTA Registry, Academic Medical Centre, University of Amsterdam, Department of Medical Informatics, J2-254, PO Box 22700, 1100 DE Amsterdam, The Netherlands. E-mail: erareg{at}amc.uva.nl; Tel:+31 20 566 7637; Fax:+31 20 691 9840.