However, in asking National Registries to provide an extension of the core data set to be transmitted to the Registry it is essential having a preliminary thorough discussion on standardisation of the data being collected. This is important mainly because several regional and national registries have already started such data collection and established data collection rules at a national level.

Furthermore, collection of CPMs is an almost unique opportunity for potentiating registry research and for effectively opening new research opportunities to competent European investigators interested in registry research. The ERA-EDTA Council perceives that it is important investing in this area and has therefore generously provided additional resources to the Registry to further develop the QUEST initiative. To effectively start the QUEST initiative a triggering event is needed. The Registry Committee has therefore planned the first QUEST convention in the spring of 2005. In this convention the officers of the ERA-EDTA, members of the ERA-EDTA Registry, National Registries representatives as well as 5 groups of experts nominated by National Registries representatives (in consultation with their national societies) will convene for the first time to establish a shared framework for developing the QUEST initiative. Working groups will discuss in depth on practical problems related with data collection and standardization, four in the critical areas of renal care mentioned above and a fifth one investigating the possibilities of electronic data extraction. A major goal will also be the formulation of new research projects.

These projects will be the direct emanation of the proposals made by the working groups. In a way this approach is an upturn in comparison to the traditional “top-down approach” of the registry. We now would like to add a bottom-up approach where proposals will emanate from working groups and will be collegially evaluated at Registry level. Projects that are sound, feasible and clinically relevant will become ERA-EDTA registry projects, while at the same time the investigator submitting it will stay in charge of the project. The Amsterdam staff will give methodological advice in project development and will be a powerhouse of supporting and furthering the best proposals. The registry committee remains confident that this new open approach will eventually prove to be the much needed boost of trust and enthusiasm to epidemiologic research on renal disease to ERA-EDTA countries.