The next step will be to make this list into a standards document.
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. The QUEST data extraction group (chair R. Kramar - Austria) 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 from electronic patient management information systems. A uniform infrastructure for data extraction will be developed. Together with other partners QiN (Germany) produced a report on data safety aspects and standards for secure data transfer.
The standardization of indicators and data extraction have 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). Their work is described in more detail in another contribution to this Newsletter. Finally, in a report for the Public Health Executive Agency the new registries in the project defined their ‘starting points’ as of 2007 as well as their ambitions for the year 2010. To assist these registries in their efforts the ERA-EDTA Registry organized a number of educational activities. After attending the Introductory Course on Epidemiology participants joined three more registry course days in the AMC in Amsterdam. Lectures and hands-on-sessions on 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 registry work.

Kitty Jager, NephroQUEST Project Manager, Ronald Cornet, NephroQUEST IT Manager and Carmine Zoccali, ERA-EDTA Registry Chairman