ERA-EDTA President
Gérard M. London
Paris, France
Registry Committee
Christoph Wanner (Chairman)
Wuerzburg, Germany
David Ansell
Bristol, United Kingdom
Christian Combe
Bordeaux, France
Liliana Garneata
Bucharest, Romania
Faiçal Jarraya
Sfax, Tunisia
Pietro Ravani
Cremona, Italy
Ramon Saracho
Santa Cruz de Tenerife, Spain
Franz Schaefer
Heidelberg, Germany
Staffan Schön
Stockholm, Sweden
Enrico Verrina
Genoa, Italy
Kitty Jager
Managing Director, Senior Epidemiologist
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
Moniek van de Luijtgaarden
Mark Titulaer
Data manager
contributors map
Contributions as of June 1, 2010
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

Introductory Courses on Epidemiology in 2011: How to register?

From Marlies Noordzij, ERA-EDTA Registry Epidemiologist

The ERA-EDTA Registry organizes two to three CME Introductory courses on Epidemiology per year in different places in Europe. The first course was organized in 2004 and last September the 17th edition took place in Antalya, Turkey. The aim of these epidemiology courses is to contribute to the quality of research in nephrology by providing nephrologists and researchers with knowledge on basic epidemiology principles and by having them practise their new skills in hands-on sessions. The courses have always been very well evaluated by the more than 400 participants so far.

Since 2 years, the courses are organized in conjunction with a meeting of a national or regional society of nephrology, so that participants can combine visiting the congress and the course. For this reason, the courses are primarily aiming at nephrologists and nephrology researchers from the organizing country. However, in each course there are also places available for participants from abroad.

In February 2011 an epidemiology course will be organized in Salzburg, Austria. In addition, there will be a course organized as pre-congress course of the European Society of Paediatric Nephrology (ESPN) Congress in Dubrovnik, Croatia (September 2011) which is aiming at paediatric nephrologists.  

We would like to encourage nephrologists and nephrology researchers that are interested in learning more about epidemiology and clinical research to register for one of our courses. For each course, the ERA-EDTA offers 2 travel grants of 500 euro to participants that are under  35 years of age and early in their career.

More information on the Epidemiology courses in 2011 can be found on the ERA-EDTA website soon: http://www.ndt-educational.org/eracourses.asp


   Marlies Noordzij


The need for dialysis registries in developing countries

From Faiçal Jarraya, ERA-EDTA Registry Committee member


Faiçal Jarraya

The world is facing a huge epidemic. Chronic kidney disease is now a major health problem, not only in the developed world, but in developing countries as well. The costs of treatment of chronic kidney disease and especially end stage renal disease (ESRD) have a high impact on the national health budget. Despite the limited access to renal replacement therapy in many countries, the expected high prevalence of ESRD obligates health authorities to expand treatment programs for ESRD. The absence of parallel transplantation program development, leads to an increase in patients treated by dialysis. To solve such a problem, health authorities in developing countries, especially those with low and middle income, have to plan the treatment of ESRD and to initiate preventive strategies against major causes of ESRD. The need to develop a data collection tool, like a dialysis registry, becomes a major purpose.

Read more


Update of the ESPN/ERA-EDTA Registry

From Karlijn van Stralen, ESPN/ERA-EDTA Registry Coordinator

Since 2007 the ESPN/ERA-EDTA Registry has collected annual data regarding all children on renal replacement therapy in Europe. At the moment, data are being collected from 31 countries. As a result, information is available on 7,687 children under the age of 20 who started on dialysis or received a renal allograft between 1997 and 2009. This makes the ESPN/ERA-EDTA Registry one of the largest sources of information in this field in the world. 

Based on the large amount of clinical data that is available, several papers are in preparation. This has been fruitful so far. For example, in 2010, two papers containing data from the Registry have been published. First the demographic data from the annual report of 2009 (containing data on 2007) have been published in Pediatric Nephrology. In addition, the first clinical paper showing the distribution of eGFR at start of renal replacement therapy in children has been published in NDT. Furthermore, three papers are currently under peer review.

Secondly this year the staff of the registry was extended. Due to a generous grant from the ERA-EDTA Council, we were able to extend the working hours of the project coordinator (Karlijn van Stralen) and a part-time data-manager, Mark Titulaer, could be employed. He is developing a tool for internet-based data-collection. Furthermore, in April, Marjolein Bonthuis started as a PhD student on the Registry. Currently she is working on both a methodological and clinical paper on anthropometric measures, i.e. height, weight and body mass index. Finally, Jerome Harambat, a French pediatric nephrologist, received a grant from the QUEST project for a 1-year fellowship at the Registry. He will be studying, amongst others, the treatment of renal allograft recipients. Within the Academic Medical Center in Amsterdam, the group is working under the supervision of Kitty Jager.

We would like to thank all collaborators in the different countries for making this possible. We hope that by working together in research projects, we will improve pediatric nephrology care in Europe. Furthermore, in future, we will also focus on long term outcomes, linking adult and pediatric nephrology data.









  Karlijn van Stralen


ERA-EDTA Registry publications in 2010

Published with Registry authorship

Click here to read all the 2010 Registry publications.
Forthcoming issues
Newsletter 18, June 2011
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