The ERA-EDTA Registry began in Amsterdam in 1964. The office later moved to Germany and in 1976 moved again to St Thomas's Hospital in London where it remained until November 1999. After a highly successful period of operation which lasted for about 25 years the ERA Registry began to experience difficulties at the beginning of the 1990s. These difficulties were along two lines. Firstly the Registry had failed to keep up to date with its computerized database and attempts to introduce new computer systems ran into technical difficulties. Secondly increasing problems were being experienced in obtaining comprehensive data returns from some of the constituent countries in particular those countries which had not developed their own national registry. Over the past few years there has been an increasing realization that radical revision of the operation of the Registry was necessary. At this point the problems being experienced by the Registry were compounded by notification that the accommodation previously provided by St Thomas Hospital would cease to be available towards the end of 1999. By fortunate coincidence this adverse event was followed shortly thereafter by an invitation from the Academic Medical Centre (AMC) in the University of Amsterdam to take over the running of the Registry and house it in the Departments of Epidemiology and Informatics in the AMC. This offer was debated by the Council of the ERA and at a meeting of national registry representatives in Madrid in September 1999 it was decided to accept the offer.
During the first few months of 2000 a contract was drawn up between the ERA and AMC and this was signed at the end of May. Earlier in the year representatives of the established European national registries had been invited to a meeting in Amsterdam and representatives of 27 registries attended the meeting on 14 March 2000. At this meeting proposals were put to the national registries as to how the new ERA Registry would operate. In the future data will only be collected from national or large regional registries and only from those which can provide comprehensive data for the population which they cover. Data collection and analysis will be along two lines. Firstly core data will be transmitted to the Registry in the AMC which will provide demographic information on all the dialysis and transplant patients in the areas covered by the national registries. In addition sampling methods will be developed to enable the Registry to collect more detailed information from cohorts of patients in order to answer specific questions. These projects will be carried out by accessing the databases of national registries at the time of the analyses. Some of the topics which have been suggested so far for analysis are hepatitis C, cardiovascular mortality and documentation of rare diseases and diseases with variable prevalence between countries. A wide variety of additional research projects are envisaged as the new ERA Registry becomes established. Epidemiological research projects by PhD students from the participating European registries will be encouraged. These plans make the future ERA Registry much more of a collaborative effort between national registries and the ERA than has been the case in the past. In order to further this aim of greater collaboration a new Registry Committee is in the process of being established. It will have ten elected members who will provide expertise in the epidemiological aspects of renal replacement therapy and the more technical aspects of data handling within and between registries. Four of the ten members will be elected by the national registries, four by the ERA Council and two by the European Society for Paediatric Nephrology. In addition the president of the ERA will be invited to attend ex-officio and the members of staff of the Registry Office will also attend. The role of this committee will be to provide supervision and advice to the Registry office in the AMC and it will supersede the Scientific Advisory Board of the Registry which has been disbanded.
The Registry office has two full time members of staff. Kitty Jager is a nephrologist and epidemiologist and she will be in charge of the day-to-day running of the office. Paul van Dijk has a background in medical informatics and recently spent a year in the USA participating in the University Renal Research and Education Association (URREA) and the World Wide Dialysis Outcome and Practice Pattern Study (DOPPS). The office will be supervised by two senior members of the AMC, Friedo Dekker who is an epidemiologist and Ronald Cornet who is a member of the Department of Informatics.
The AMC has a proven track record in the supervision of registries and this, together with the active collaboration of the European national registries, should lead to a successful future for the new ERA Registry.
For the past 2 years delegates to the annual ERA 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 in the morning with a business meeting in the afternoon. A further meeting along these lines has been planned for the Nice Congress and will take place in the Congress Centre on Sunday 17 September 2000. Further information about this meeting can be obtained from the offices of the national registries or from the Registry office in Amsterdam. Kitty Jager's contact details are as follows:
ERA-EDTA Registry
Academic Medical Centre
University of Amsterdam
Division of Clinical Methods and Information, J2262
PO Box 22700
1100 DE Amsterdam
The Netherlands
Tel: +31 20 566 7637, Fax: +31 20 691 9840, E-mail: erareg{at}am c.uva.nl
The 1990s have been a period of difficulty and uncertainty for the ERA Registry but the opening of the office in Amsterdam augers well for the future of the ERA Registry in the new millennium.