In the Toledo Convention we established 5 working groups (WGs) on diverse topics such as Cardiovascular complications in ESRD, Anaemia, Dialysis adequacy, Ca, P & bone and Electronic Data Extraction. The anaemia WG in Toledo formulated four projects. These projects were intensively discussed via e-mail among WG members. Eventually, two projects, a survey on anaemia correction in Europe followed by a 1-year follow-up, and a European survey on anaemia in renal transplant patients are considered. Both projects are of importance particularly in the light of the recent CREATE and CHOIR studies and on the cautionary editorials that appeared on major medical journals.

AMGEN has given his availability for co-financing these projects and hopefully a definitive agreement established along the ethical and regulatory needs of participating national and regional renal registries will be finalised very soon. The electronic data extraction group is perhaps the most important among our WGs, because streamlining data retrieval from existing clinical files and databases may constitute a tremendous boost for projects of any kind. The group did not convene in Vienna, but it used the previous months to develop a draft implementation guide, specifying proposed clinical data and the messaging model, according to the international communication standard HL7 version 3. The dialysis adequacy WG considered 7 projects and last year, during the first Vienna Convention, decided to focus on a project related with the assessment of practice patterns of dialysis dose measurement in Europe. This is a low budget, much interesting project which has already been started and Dr. Jeroen Kooman and Dr. Cecile Couchoud presented the first data wave of this study during this third Vienna Convention.

Other projects are being developed by the WG on cardiovascular diseases in ESRD and by the Ca,P & Bone WG, but these still need further refinements and final consensus among WG members. The cardiovascular working group very early came up with a large interventional trial (the PRIMA Study, Protocol Intensified Multifactorial Approach in hemodialysis patients) but preparing a multinational pan-European trial requires agreement on several issues that are still not worked out. Certainly, QUEST this year received an enormous boost by the fact that the European Commission awarded a cofinancement to NephroQUEST, a pan-European project on quality of care in ESRD. Hopefully, we will have a specific hands-on convention for starting NephroQUEST in September in Amsterdam.

QUEST has started and we are now in the journey aimed at achieving our goals. This is not an easy journey and we will have setbacks and advancements. We will go step by step aiming at serving regional and national registries and the European renal community at large with a medium-long term vision.

 

Carmine Zoccali, ERA-EDTA Registry Chairman and Kitty Jager, ERA-EDTA Registry Managing Director