ERA-EDTA President

Francesco Locatelli

Lecco, Italy

Registry Committee

Carmine Zoccali (Chairman)

Reggio di Calabria, Italy


Giuliano Colasanti

Milan, Italy

Bert van der Heijden

Rotterdam, The Netherlands

Reinhard Kramar

Wels, Austria

Torbjørn Leivestad

Oslo, Norway

Fernando García López

Madrid, Spain

Alison MacLeod

Aberdeen, Scotland

Bénédicte Stengel

Villejuif, France

Jane Tizard

Bristol, United Kingdom

Christoph Wanner

Würzburg, Germany

Kitty Jager

Managing Director

Paul van Dijk

Medical Information scientist

Ronald Cornet

Senior IT Specialist

Friedo Dekker

Senior Epidemiologist

Vianda Stel


Sabine Bos

Gita Guggenheim
Contributions as of May 15, 2004

registries contributing individual patient data to the ERA-EDTA registry database

registries sending selected aggregated data to be included in the annual report
no registry/no contribution/data not eligible for analysis
Contact details
Postal address
ERA-EDTA Registry
Academic Medical Center
University of Amsterdam
Dept. of Medical Informatics, J1b-125
P.O.Box 22700
1100 DE Amsterdam
The Netherlands
Visiting address
Meibergdreef 9
1105 AZ Amsterdam
The Netherlands
Phone: +31 20 566 7637
Fax: +31 20 691 9840

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

from Carmine Zoccali, Chairman of the ERA-EDTA Registry

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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Carmine Zoccali

A Primer on Survival Analysis – the Kaplan-Meier method

from Kitty Jager, Managing Director of the ERA-EDTA Registry

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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Kitty Jager

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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Paul van Dijk

The process of building up and coordinating registries in Spain

From Fernando García López, ERA-EDTA Registry Committee Member

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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Fernando Garcia López

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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Bénédicte Stengel

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.

More information on these courses will become available on

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

5 June - ERA-EDTA Registry Report. CRR Auditorium 10.30 to 12.00 a.m.
Forthcoming issues
Newsletter 5, March 2005
Newsletter 6, June 2005
Newsletter 7, September 2005
Newsletter 8, December 2005