The QUEST project: a first step forward, clinical guidelines monitoring and entering a new era of Registry Research in Europe

In previous newsletters we elucidated various aspects of the QUEST (QUality European Studies) initiative. The ERA-EDTA Registry aims at establishing systematic data collection on clinical performance measures (CPMs) to form a solid basis for benchmarking at a European level on a series of indicators of the quality of clinical care being delivered at a regional, a national and a European level. After thorough discussion within the Registry Committee, it was decided to focus on monitoring CPMs in 4 critical areas of renal care, i.e. anemia, Ca and Phosphate metabolism, Cardiovascular Risk and Dialysis Adequacy. We feel that our mission is being useful to European nephrologists to provide information to improve their clinical practice. Thus, our principal aim is monitoring adherence to Clinical Guidelines. The standards set by the European Best Practice Guidelines will be our reference.

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A Primer on Survival Analysis – the Kaplan-Meier method

In the previous newsletter it was explained that the type of regression analysis to be used for data analysis depends on the type of the outcome variable. If the outcome is ‘time-to-event', we need to perform survival analysis. The use of survival analysis is not restricted to time-to-death data for the analysis of patient survival; it is also used to study the time to other single endpoints, such as transplantation or peritonitis, and to combined endpoints, like “death or myocardial infarction”.

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Mortality in the General Population and its Relationship with RRT

From Paul van Dijk, medical information scientist ERA-EDTA Registry

In Europe we observe large differences in the incidence of RRT and in the mortality rates of patients on RRT. In fact, there is a clear north-south gradient. While the southern regions tend to have higher incidence rates than in the northern parts of Europe, the mortality rates in the south are lower than in the north.

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The process of building up and coordinating registries in Spain

Information on epidemiology of chronic renal disease has to rely entirely on the work of national and regional registries or, otherwise, on the work of dedicated local clinicians. In Spain, where no national registry of dialysis and renal transplantation has ever been set up, the process of building up registries in the different regions or “autonomous communities” has spanned over the last twenty years and is still unfinished. Some registries are veteran, with more than 20 years of experience, several others have been working for more than 10 years, others have just started, and a few are about to be set up. Out of 17 autonomous communities in which Spain territorial administration is divided only two do not have plans to establish a registry yet.

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The French REIN Registry - A tool for public health and research

from Bénédicte Stengel, ERA-EDTA Registry Committee Member

The French REIN (Renal Epidemiology and Information Network - Réseau Epidémiologie et Information en Néphrologie) registry started in 2001. Its goal is to set up a continuous data system with the resources in epidemiology and data management necessary to:

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The second "Introductory Course of Epidemiology" will be held in Toledo (Spain) on March 13-15, 2005 and the third one in Würzburg (Germany) on October 9-11, 2005.

Registry activities during the ERA-EDTA Congress in Istanbul (4-7 June, 2005)