Contributions as of July 1, 2006

QUEST Project approved by PHEA (Public Health Executive Agency of the European Union)

In general, renal registries in Europe collect very basic patient data. A number of National or Regional Renal Societies have successfully extended the scope of their Registries or are in the process of doing so, but until recently the information included in these databases was mainly used for dialysis centres planning and to produce information on patient outcomes. On average, EU countries spend about 3% of their overall health budget on renal replacement therapies. Therefore monitoring the quality of care is fundamental for professional, financial and ethical reasons. In fact, the European scenario is rapidly changing and patients, health authorities and doctors now increasingly demand information on the quality of care of dialysis and transplant patients.

The European Renal Association-European Dialysis and Transplant Association (ERA-EDTA) has made major efforts to produce and promote evidence-based clinical practice guidelines for dialysis and transplant patients, the European Best Practice Guidelines (EBPG). These well conceived guidelines have been widely “disseminated”, but their actual impact upon clinical practice still remains a black box in the majority of EU countries. Producing solid databases allowing direct comparisons of EBPG goals with actual clinical achievements is the basis for quality improvement programs. There is a widely perceived need of a gradual transition of Registries toward systems capable of sustaining these programs and a few registries have already successfully extended the breadth of their data collection to start quality improvement programs.

In 2004 the ERA-EDTA Registry put these problems at central stage in the ongoing collaboration with national Registries and the QUality European STudies (QUEST) initiative is an important result of this interaction. An essential step of this last initiative is that of establishing standards for high quality data collection. This is a tantalising task which requires important investment in human and financial resources.

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In the 1850s Florence Nightingale argued strongly that only by collecting and analysing pertinent data was it possible to determine the extent to which hospitals and other public institutions were effective in serving those who relied on their help.

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