Given the additional working burden for renal centres and the fear of incomplete data returns, many registries have long hesitated to extend their data collection. After all, the data collection in most European countries is still voluntary and not linked to the reimbursement of RRT. It was the QUEST data extraction group (chair R. Kramar - Austria) that took action to try and solve this problem. The enormous variety of electronic patient management systems used in dialysis centres across Europe has led this group to take a standardised approach to this matter also. The group adopted Health Level 7 (HL7) version 3, an international standard for the exchange, management and integration of electronic healthcare information, to be instrumental in the data extraction process. A uniform infrastructure for data extraction from electronic patient data management systems using HL7 will be further developed under the NephroQUEST project. Together with other partners QiN (Germany) produced a report on data safety aspects and current standards for secure data transfer.
The standardization of both clinical performance indicators and data extraction has also made it necessary to take a fresh look at the different ERA-EDTA coding systems and the definitions for variables used by renal registries. This task has been taken up by the QUEST coding and definitions working group (chair K. Simpson – United Kingdom) which is currently working on the extension and the definitions of the coding system for primary renal disease and the definitions of co-morbidity and treatment modalities. The work of this group will provide vital input for the NephroQUEST work package on data extraction.
  Finally, the ERA-EDTA Registry organized a course for the new renal registries in the project. After having attended the Introductory Course on Epidemiology participants were offered a three-day registry course in the Academic Medical Center in Amsterdam. Lectures and hands-on-sessions on subjects like data quality, benchmarking, database software, data processing practice and reporting, standards and terminology systems were alternated with presentations by Reinhard Kramar (Austrian Renal Registry) and David Ansell (UK Renal Registry) who are well-known and much respected for their work in the area of national renal registries.

This news item arises from the NephroQUEST project, which has received funding from the European Union, in the framework of the Public Health Programme (project no: 2006114).