However the project was put in the “reserve list” rather than in the main list and the chances to be awarded this year may not be very high. Nonetheless, the positive evaluation by the EU commission should be taken as a successful start because this experience will certainly be much useful to better calibrate the new submission we intend to make in 2006.
As a parallel initiative we have now formed an international advisory group aimed at supporting the whole initiative and the submission of the common project to EU commission in particular. In the meanwhile we will continue the programs already started. Several regional and national registries have a clinical data collection much larger than the basic data-set required by the ERA-EDTA Registry.
In the Toledo convention Registry representatives have agreed to share some clinical indicators they have on file with the central ERA-EDTA Registry coordinating unit in Amsterdam. This will allow preliminary evaluation of the quality and consistency of these data and will make feasible exploratory analyses, which is fundamental to properly address the difficult problem of data standardization. The working groups of QUEST have functioned as collectors of ideas and research proposals. I am truly impressed by the many interesting suggestions gathered so far.
In a meeting held in Istanbul during the ERA-EDTA Congress, the working groups have filtered the initial list of research proposals taking into account feasibility, possibility of funding and other practical aspects and discussed further on data standardization. Prof. Christoph Wanner has made a very interesting proposal for an innovative intervention study (QUEST-ANIMA) and you will read about this proposal in a separate note by him. We expect the working groups soon reach and ratify consensus on data standardization. To this end our Registry Director Kitty Jager will circulate a document which summarises specific recommendations. After approval by the working group coordinators, this document will be published and widely circulated among European nephrologists both via the Registry Newsletter and NDT-Educational.
A particular effort will be made at advancing the project of automatic data extraction because this will simplify and accelerate the construction of a flexible, expandable database useful to support working group projects. To further reinforce the links and the constructive and friendly relationship established in the working groups, we have planned a second QUEST convention to be held next year in Vienna in early March. The main scope of this Vienna convention will be that of better identifying the difficulties and the problems that the working groups encountered during the first year of activity and to advance a more intensive communication between and within working groups. I have no doubt that the second convention will be as successful as the first one and that the efforts of building common ground, share ideas, and projects will eventually produce a virtuous cycle alimented by patient application and mutual trust.