The basic tenet of the QUEST initiative is a bottom up approach, i.e. an approach aimed at constructing common goals and common research projects emanating from National and Regional Registries. In fact, working groups were assembled on the basis of proposals of national and Regional registries. In Toledo working groups were chaired by first class and worldwide re-known experts (F. Locatelli, J. Cannata-Andía, C. Wanner, J. Kooman and R. Kramar) but a fundamental role for coordination and project building was played by the co-chairs elected during the Toledo Convention. The elected working groups co-chairs are B. Stengel and M. Jadoul (cardiovascular), L. Pedrini and C. Couchoud (dialysis adequacy), J.P. Wauters, W. van Biesen and L. Del Vecchio (anaemia), C. Tielemans and D. Memmos (bone disease) and H. Augustijn (electronic data extraction).
Experts taking part in the QUEST convention in Toledo had very intense exchanges of ideas and open, frank discussions about data standardization. As a result of these efforts we have already received some recommendations for the selection of clinical indicators for guidelines adherence monitoring. Apart from this fundamental contribution, working groups have also formulated a rich list of research projects that can be sensibly applied with the help of national and regional registries. For example the anaemia working group identified renal transplantation as an area where available information is still limited and where stimulating projects can be effectively started with a limited set of new data. Likewise the “bone-disease” working group suggested renal transplantation as an area where registry-based observational studies may prove of particular value. The “dialysis adequacy” and “cardiovascular disease” working groups produced a long list of interesting ideas and these will be thoroughly evaluated to select those that can be realistically pursued in the near future.
At this stage we are multiplying our efforts to facilitate contacts between investigators and working group experts to streamline research projects that can be accomplished on the basis of information already available in the Registry database or by using data easily retrievable from national and regional registries or from data-bases external to the Registry.
We aim at maintaining momentum on the QUEST initiative to start a virtuous cycle that may allow shaping QUEST as an open, stimulating and widespread enterprise useful to the practicing renal clinician and to the clinical investigator alike.
In this perspective, thanks to the extraordinary efforts made by our Registry Manager Kitty Jager and the Registry staff in Amsterdam, we have submitted a specific project to the European Commission. If, as we hope, this project will be co-financed by the European commission the QUEST initiative will have an important infusion of energy and optimism in this delicate phase of “taking-off”.
|Chairman of the ERA-EDTA Registry|