ERA-EDTA President

Gérard M. London

Paris, France

Registry Committee

Carmine Zoccali (Chairman)

Reggio di Calabria, Italy


David Ansell

Bristol, United Kingdom

Christian Combe

Bordeaux, France

Reinhard Kramar

Wels, Austria

Torbjørn Leivestad

Oslo, Norway

Fernando García López

Madrid, Spain

Alison MacLeod

Aberdeen, United Kingdom

Jane Tizard

Bristol, United Kingdom
Enrico Verrina
Genoa, Italy

Christoph Wanner

Würzburg, Germany

Kitty Jager

Managing Director

Ronald Cornet

Senior IT Specialist

Friedo Dekker

Senior Epidemiologist

Vianda Stel

Marlies Noordzij
Karlijn van Stralen
Anneke Kramer
Medical Information scientist

Annick van den Broek

contributors map
Contributions as of July 1, 2008
red registries contributing individual patient data to the ERA-EDTA registry database

orange registries sending selected aggregated data to be included in the annual report

white 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
E-mail: erareg@amc.uva.nl
Website: www.era-edta-reg.org
neprhoquest newsletter

Note from the Leaving Chairman

From Carmine Zoccali, ERA-EDTA Registry Chairman


Carmine Zoccali

Six years ago when I was nominated by the Council Chairman of the ERA EDTA Registry, I tried to envisage how I could help the Registry consolidate and grow. My predecessor, Dr. Douglas Briggs, had made a tantalizing effort for bringing back to life the Registry after the 1999 collapse. Thanks to him and Dr. Raymond Krediet arrangements were made for the management of the Registry by a team at the Department of Medical Informatics of the University of Amsterdam. The team was composed by young, motivated, competent epidemiologists and information technology experts and was led by an effective managing director, Dr. Kitty Jager. In 2003 the reborn Registry was a solid federation of registries and the first papers were being published. In this scenario I felt that the best way to help the Registry was to contribute to shape its mission for the challenges that the changing world of nephrology and health care systems in Europe demanded at that time. With some naïveté, I envisaged the activities being extended to the promotion of quality improvement programs, education and special studies in connection with biobanks.

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Note from the Incoming Chairman

From Christoph Wanner, incoming ERA-EDTA Registry Chairman

Following the World Congress of Nephrology 2009 I have the honor to step in the position of chairman of one of the world most renowned dialysis registries which has a tradition of more than 40 years. As Prof. Carmine Zoccali is moving out he is leaving a bar of success high across the sky of European registries. With Kitty Jager, as the solid centre position and chief officer of the Amsterdam based Registry, I personally feel confident to fulfill the requirements the Society expects from the chairman of its Registry. The support of the Society is substantial for the new tasks being threefold: First, the successful work of the previous chairman and the Amsterdam group seeks continuation. Long-lived programs and a new grant
(the second in row) from the European Community FP7 framework promises high calibre research in upcoming years. Second, we slowly move towards building up a “Low Clearance Clinic Registry” using focused data collection. Third, the Registry will aim to focus on rare diseases dissecting from the database and collecting from the new predialysis Registry. We will not only use our existing data base, but also will embark into prospective data collection of rare events (e.g. pregnancy on dialysis). We also aim to liaise with existing small national registries in the field or rare disorders (e.g. calciphylaxy) and rare diseases (e.g. ciliopathies) with the option to support biobanking. The final aim is to provide a solid database for the best specialists and scientists to exploit the phenotypes with adequate methodology, phenotypes which are meticulous collected by clinicians. The time has come were all contributing clinicians can also participate ad personam et nomen in so-called multi-authorship, registry derived, clinical science research projects.


     Christoph Wanner


Last Meeting ERA-EDTA Registry Committee 2006-2009

registry committee
From left to right: David Ansell, Fernando Garcia Lopez, Vianda Stel, Moniek van de Luijtgaarden, Reinhard Kramar, Kitty Jager, Christoph Wanner, Marlies Noordzij, Torbjorn Leivestad, Alison Macleod, Christian Combe and Karlijn van Stralen. Carmine Zoccali, Enrico Verrina, and Jane Tizard are missing in this picture.

On March 14 the last meeting of the ERA-EDTA Registry Committee 2006- 2009 took place in Brussels. In addition to our chairman Carmine Zoccali who will be succeeded by Christoph Wanner, the following Registry Committee members have reached the end of their term: Reinhard Kramar (Austria), Torbjorn Leivestad (Norway), Alison MacLeod (UK), Fernando Garcia Lopez (Spain) and Jane Tizard (UK). We thank all of them for their valuable efforts in the past years. To replace the members leaving the Committee, four new members will be elected during the Meeting for national and regional registries on May 22.


The 10th Introductory Course on Epidemiology

From March 14-16, 2009 the 10th regular edition of CME Introductory Course on Epidemiology took place in Brussels, Belgium. Special editions of the course took place in Argentina and Greece. In Brussels, thirty-three participants from 13 European countries attended the three-day course which was hosted by local organizer Frederic Collart. During the course ERA-EDTA Registry committee members and epidemiologists from the ERA-EDTA Registry office in Amsterdam provided an introduction in clinical epidemiology by trying to relate epidemiological theory to examples from nephrology.
The lectures focused on topics such as measuring disease occurrence, study designs, bias and confounding, and survival analysis using Kaplan-Meier and Cox-regression techniques. The knowledge gained from lectures was applied during hands-on-sessions, in which the participants performed statistical analyses themselves using SPSS. Although the course is short it tries to bring across a large quantity of information. Though having already taught more than 300 nephrology researchers the course still seems to fulfil a need. After Brussels another one was given in Mexico-City as a pre-congress course
to the SLANH-Congress. The next courses will be held in Bologna, Italy (October 2009) and Vilamoura, Portugal (February 2010).
ERA-EDTA Registry Activities during the World Congress of Nephrology 2009 in Milan, Italy (May 22-26)

Friday, May 22 - 9.00 - 12.00 a.m. – Meeting for national and regional registries
Saturday, May 23 – 8.00 - 9.15 a.m. - ERA-EDTA Registry Symposium

Forthcoming issues
Newsletter 15, November 2009
why become a member
era-edta renewal membership