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, act two.

From Carmine Zoccali, Chairman of the ERA-EDTA Registry

As delineated in previous newsletters and in two slide presentations (see NDT educational, CME Slide Forum, Archive, - ), the QUEST initiative launched in Toledo has established 5 working groups focused on the main clinical problems of dialysis patients and on automatic data extraction. This new opportunity for exchange of ideas and for starting new research programs on the epidemiology of renal diseases was considered a timely move by European Registries and by leading experts in various research areas. The first step forward of this joint effort was the submission of a pan-European research project to the European commission in March 2005. The project has received a very positive evaluation and a high scoring by the commission.

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

Large controlled clinical trials in nephrology Part 2

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

Newsletter No 6 outlined the hierarchy and classification of types of clinical research studies. Several important requirements for large controlled clinical trial have been described. Investigators usually work hard in aiming to publish their efforts in international recognized journals that provide the highest awareness for their data. These journals usually have a high impact factor, receive the attention of a large audience (high print issues) and the media pick up their articles.

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Christoph Wanner
Standardization of IT by HL7 v3 in Care Processes of Dialysis Patients in Germany
Kai Heitmann, MD1; Markus Stoffel, MD2; Conrad A. Baldamus, MD2
1Institute of Medical Statistics (IMSIE), University of Cologne & HL7 Group, Germany; 2QiN-Group and Division of Nephrology, University Hospital Cologne, Germany, supported by KfH Kuratorium für Dialyse und Nierentransplantation; Cologne, Germany

Kai Heitmann

•  What is HL7 and what is Version 3?

Markus Stoffel

Founded in 1987, Health Level Seven, Inc. ( is a not-for-profit, ANSI-accredited standards developing organization.

It is dedicated to providing a comprehensive framework and related standards for the exchange, integration, sharing, and retrieval of electronic health information that supports clinical practice and the management, delivery and evaluation of health services.

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Comment on HL7
From Reinhard Kramar, Austrian Dialysis and Transplant Registry, member of
the ERA-EDTA Registry Committee and Chairman of the QUEST Data Extraction
Working Group

Renal care units and especially dialysis units throughout western world widely use electronic medical record systems. The systems are primarily intended to mirror electronically the complete treatment of patients, care pathways and the quality and coherence of the care process. Unfortunately we are facing the fact that most systems cannot exchange information with all systems for which this would be desired. Remaining problems are differing structures, differing levels of granularity, different code systems and the efficient capture of physician and nurses information in a coded form. Research is still needed to overcome these problems.

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Reinhard Kramar
Selection bias: how the selection of study populations and selective loss of data may lead to wrong conclusions
From Kitty Jager, Managing Director of the ERA-EDTA Registry

Last newsletter we defined bias as a systematic error. One of the most frequent types of bias is selection bias. Selection bias occurs when there is something inherently different between the groups being compared that could explain differences in the observed outcome. This may result from the way subjects are selected into the study or because there is selective loss of subjects prior to data analysis. Selection bias may arise from choices made by the investigator. In case-control studies for example it is crucial to choose the right control group. Many studies on the health of workers have compared the death rates in workers in a specific job with that of the general population.

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Kitty Jager

The third "Introductory Course on Epidemiology" Würzburg (Germany) October 9-11, 2005.

From Christiane Drechsler M.D., local co-organizer of the Course

From October 9-11, 2005 the 3rd Course on Epidemiology took place in Würzburg, Germany. Twenty-eight participants from many European countries, such as Austria, Belgium, Bulgaria, Egypt, Czech Republic, FYROM, Germany, Hungary, Lithuania, Norway, Poland, Romania, Russia, Slovakia and the UK, were enthusiastic about the course in which lectures and practical hands-on-sessions provided an insight into clinical epidemiology.

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Christiane Drechsler
Forthcoming issues
Newsletter 8, January 2006