This is truly fundamental information but with this information only basic observations on the demography and the dynamics of the ESRD population can be made. From the public health point of view this information is quite interesting, but, to the clinical nephrologists, it is instead unappealing.
Modern medicine is a true social and financial challenge demanding the identification of the best solution in a context in which available resources are diminishing. We live in the Clinical Governance era. The cycle of clinical governance includes control of staffing and management, information technology, the ability of involving both the patients and the public in the decision process, risk management, promotion of clinical effectiveness and research as well as continuous medical education. In this intellectual and managerial framework the clinical audit based on well conceived and validated clinical indicators has a fundamental role because it is the step where goals and achievements are compared. Guidelines are flourishing: recommendations on diagnosis and treatment of renal diseases are being produced by the ERA-EDTA and the American Kidney Foundation. Guidelines now represent a great resource for defining clinical indicators useful for continuous quality improvement programs and nephrologists are increasingly interested on how their clinical performance can be measured. We envision that the ERA-EDTA Registry should extend its scope by gradually becoming also an instrument useful to renal physicians in clinical practice and by offering an open source of data for scientific studies.
To fulfill this mission we have framed the QUEST (Quality European Studies) initiative, an initiative (not a project!) aimed at providing useful information and summary indicators which may be useful for monitoring adherence to guidelines at a regional, national and European level. This initiative has a bottom up approach based on working groups composed by national experts nominated by National representatives and national societies. On March 16-17, 2005, in Toledo, Spain, a convention was held to launch the QUEST initiative. In this convention almost sixty experts, nominated by national and regional registries in collaboration with their national societies of nephrology, started a common discussion on how to extract and standardise guidelines-derived indicators and to formulate new research initiatives. A special working group was formed with the precise aim of exploring the feasibility of automatic data collection from existing electronic clinical files in various European countries.
To sustain the above we submitted a project to the European Community mid-April. In this project the national registries and the ERA-EDTA Registry will act in concert to monitor and to increase the quality of patient care with ESRD. National and regional registries will be the partners of the ERA-EDTA in this project. The ERA-EDTA Registry has and will have internal research goals b ut a new priority – a core element of the QUEST initiative- is creating research opportunities to all European registry-connected investigators. This is a great challenge that demands dedication, patience, perseverance and full awareness that concrete results may be obtained only in the medium-long term. In Toledo we witnessed enthusiasm and willingness to participate and the time seems right for this new ERA-EDTA Registry enterprise for effectively starting this new initiative.
| Carmine Zoccali |
| Chairman of the ERA-EDTA Registry |