ERA-EDTA President

Jorge B. Cannata-Andia

Oviedo, Spain

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

Anneke Kramer
Medical Information scientist

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

QUEST on the move: the 2nd QUEST Convention in Vienna

From Carmine Zoccali, Chairman of the ERA-EDTA Registry

As you may see in the accompanying figure (Fig. 1) Epidemiology & Clinical Epidemiology is  considered  a research area of very limited interest by the vast majority of European renal physicians. This is unexpected and to a certain extent perplexing for those who believe that clinical epidemiology is the basic science to modern medicine.

The QUEST initiative, QUality EUropean Studies was started with the precise scope of enlarging the potential and the horizon of the ERA-EDTA Registry and to stimulate  interest on epidemiology. I emphasise the substantive “initiative” rather than “project”. An initiative is something needed to set in motion, is a first step of a series of actions, the readiness to embark in new ventures.

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Carmine Zoccali  
QUEST work groups aiming to launch trials in Europe: a report by Christoph Wanner on the debate during the 2nd QUEST convention
From Christoph Wanner, member of the ERA-EDTA Registry Committee

Registry Newsletter No 7 announced the potential launch of a large trial in Europe and a first draft was discussed in Vienna, March 12, 2006 during the 2nd Quest convention. As underlined previously (1st QUEST convention, Toledo, Spain, March 2005) a trial should at best be prospective, should contain an intervention administered through randomization, therefore controlled, and should test for outcome or solid endpoints. Data gathering capacities of the Registry and overall feasibility should be guaranteed within the frame of a reasonable budget.


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Christoph Wanner
Information Bias
From Kitty Jager, Managing Director of the ERA-EDTA Registry


Information bias is a systematic error in a study that can arise because wrong information has been obtained about or from study objects. Such may be the case for exposure to risk factors or for disease. If the information is collected in categories this will lead to wrong classification, so-called misclassification. Examples of misclassification of exposure are: a PD patient being categorized as a high transporter, while being a low transporter, being coded as a light smoker while being a heavy smoker, being reported as having received sufficient Kt/V according to the guideline, whereas in reality the dialysis dose was too low. Some causes for misclassification of exposure status are imprecise measurement, patient’s self-report, interviewer bias or incorrect coding.

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Kitty Jager

The QUEST Initiative: Activity Report of the Anaemia Working Group (March 2005 - March 2006)

From Jean-Pierre Wauters, on behalf of the QUEST Anaemia Working Group

anaemia group

The Anaemia Working Group

Under the leadership of the QUEST initiative directors, the Anaemia Working Group (WG) has first elaborated the parameters that appear necessary to setup an investigative and quality improvement tool in the field of anaemia and chronic kidney disease, that would lend itself to integration in an electronic data-base.

Based on the number of parameters requested by the other WGs, the anaemia list had to be further reduced to 10 factors that appeared essential to most of the WG members for the clinical and biological evaluation of anaemia in those patients.

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Newsletter from Sweden

From Karl G Prütz and Staffan Schön

Sweden hitherto has two separate registries covering renal replacement therapy (RRT), the Swedish Registry for Active Treatment of Uraemia (SRAU) and the Swedish Dialysis Database (SDDB). Both registries collect individual data, based on the Swedish social security number system, with a lifelong unique number for every citizen, making epidemiological follow-up easy. The social security number system also makes linking of records from various databases simple and reliable. Validation studies have shown that SRAU and SDDB now have almost complete national coverage.

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Karl G Prütz   Staffan Schön
QUEST Working Group on dialysis adequacy
From Jeroen Kooman, on behalf of the QUEST Adequacy Working Group


The Adequacy Working Group

During the meetings, the QUEST Working group on dialysis adequacy focused on two main items. The first was to establish clinical performance indicators (CPI) for dialysis adequacy and to attribute priority rates to these parameters. The second aim was to propose collaborative projects on research concerning dialysis adequacy in Europe.

To be chosen by the working group as a CPI with high priority, the parameter had to be both clinically relevant and modifiable, and had to appear in European best practice or K-DOQI guidelines.

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Forthcoming issues
Newsletter 9, July 2006