In the setting of an increasing number of National Registries in Europe, the aim of the ERA Registry (the Registry) is to complement and build on the analyses which the National Registries themselves can carry out. In particular, the Registry will compare disease patterns and their treatment in the various member countries, study treatment outcomes, carry out analyses where patient numbers in individual National Registries are small and build up a demographic picture of renal failure within the member countries.
The Registry will gather data by establishing links with National and/or large Regional Registries in the countries within or bordering Europe or bordering the Mediterranean Sea. By means of these links, transfer of data can take place to the Registry and transfer of the information arising from completed analyses can also be communicated back to the National Registries.
The Registry will validate and then use for analysis data it receives from the National Registries. The analyses will fall into two broad categories. Firstly, core data will be used to provide an epidemiological and demographic picture of renal replacement therapy (RRT) in Europe.Secondly, more focused studies using data from a segment of the catchment population will be carried out with the aim of answering specific questions. Data from National Registries will be used for analyses only if all or almost all the patient population of the country are included or if the data comes from a defined region or regions of the country whose population is known. By carrying out analyses of data from the countries which constitute the European Union, the Registry will be able to provide information of assistance in the formulation of policies for the care of renal failure in the EU.
The information resulting from the analyses carried out will be communicated to the scientific community by means of presentations at the ERA Annual Congresses and other conferences and by publication in scientific journals. Also the Registry will publish an Annual Report.
The Registry will collaborate with Renal Replacement Therapy (RRT) registries based in other continents around the world. The objects of this collaboration will be to carry out joint analyses, and to participate in Registry sessions at international meetings.
Another aim of world-wide collaboration which is regarded as of importance is to improve the coding systems and definitions used by RRT Registries. In pursuit of this aim, the Registry will work jointly with other international registries.
The Registry will assist the countries affiliated to the ERA which do not yet have national registries to develop their own registry with the eventual aim of incorporating the data from these more recently established registries in the ERA database.
Department of Medical Informatics
Amsterdam University Medical Centers, location AMC
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