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


Annick van den Broek

Gita Guggenheim

Contributions as of May 1, 2005

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 ERA-EDTA Registry Working Groups: the backbone of the QUEST initiative

from Carmine Zoccali, Chairman of the ERA-EDTA Registry

As illustrated in previous newsletters, a crucial step of the QUEST initiative is creating groups of motivated experts that give advice for the monitoring guidelines adherence and propose a new wave of research projects based on data collected within the frame of the ERA-EDTA Registry.
For this purpose, during the first QUEST convention in Toledo, we formed five working groups focused on cardiovascular complications of ESRD, anaemia, bone disease and dialysis adequacy.


Read more

Carmine Zoccali
Read the slide presentations by Carmine Zoccali and Kitty Jager

The Quest initiative: a general framework  by Carmine Zoccali

The Quest initiative: where we are, where we want to go, and the road that has been chosen by Kitty Jager

Bias: systematic error

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

In epidemiologic studies there are two broad types of error: random error and systematic error. In the design of a study epidemiologists will try to reduce both sources of error. In the interpretation of study results, at a later stage, readers will still need to be aware of those sources of error and to judge how they have been addressed. Another term for systematic error is bias. Studies can be biased because of the way study participants have been selected, because of the way the variables have been measured or by some confounding factor that is not (completely) controlled. Bias is a systematic tendency to underestimate or overestimate a parameter of interest because of a deficiency in the design or execution of a study.

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Kitty Jager

A study on residual renal function within Europe

From Vianda Stel, epidemiologist and member of the ERA-EDTA Registry staff

From previous studies we know that the large differences in patient survival between European countries remain, even after adjustment for age, gender, primary renal disease, treatment modality and transplantation rate. Also, after adjustment for co-morbidity and mortality in the general population, the differences are slightly less, but they still exist. We therefore wondered whether the differences in survival may in part be due to international differences in the stage of disease of patients starting renal replacement therapy (RRT), i.e. differences in residual renal function. Such differences would result in the so called lead-time bias, favouring the survival in countries with patients starting relatively early in the process of loss of renal function.

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Vianda Stel

Large controlled clinical trials in nephrology: the need is clear - what can a registry do about it?

From Christoph Wanner, member of the ERA-EDTA Registry Committee

The hierarchy and classification of types of clinical research includes: (1) meta-analysis of several randomized clinical trials (RCTs) with original data, (2) confirmed RCTs, (3) single RCTs, (4) observational studies in cohorts of patients, (5) case control studies, (6) cross-sectional studies, (7) descriptive studies in series with literature controls, (8) case series without controls or (9) anecdotal case reports.
In nephrology, trials at the upper end of the hierarchy are not often found as they usually require multicenter approaches due to the paucity of patients with defined characteristics. Mechanistic clinical studies that prove principles may deal with small sample sizes, but occasions are rare to embark in such studies. Trials testing the effect of interventions need to recruit adequate numbers of patients.

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Christoph Wanner

The third "Introductory Course of Epidemiology" will be held in Würzburg (Germany) on October 9-11, 2005.

On October 9-11, 2005 the ERA-EDTA Registry organises the third ERA-EDTA Epidemiology Course in Würzburg, Germany. Professor Wanner is the host of this course. The first two editions were held in Rome, Italy (September 2004) and in Toledo, Spain (March 2005). On the basis of surveys among course participants these courses can be considered to be a true success. This is a small class course and therefore interested persons are invited to contact immediately the course co-organizer and ERA-EDTA Registry Manager, Kitty Jager.
More information on this course are available on

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

4 June - QUEST expert Working Group meetings followed by a Business meeting for national and regional registries, 11.00 a.m. to 3.30 p.m.
5 June - ERA-EDTA Registry Symposium. CRR Auditorium 10.30 to 12.00 a.m.
6 June - Hands-on Course - Clinical Epidemiology. Hall Museum 4. 10.30 to 12.00 a.m.
More information are available at
Forthcoming issues
Newsletter 7, September 2005
Newsletter 8, December 2005