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 July 1, 2006

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

Towards Nephro-QUEST

From Carmine Zoccali, Chairman of the ERA-EDTA Registry

QUEST is a multidimensional initiative conceived to serve the scope of increasing the qual­ity of renal care in Europe. We are striving to focus the attention of renal physicians on the importance of outcome research and epidemiological research in general. The new endeavour of the Registry is to organise two epidemiology courses/year in various European countries. This should be proof of the determination of the ERA-EDTA Registry to create valuable occasions for European nephrologists to be introduced into the fascinating field of epidemiology. For the whole initiative, a fundamental need is the transition of registries towards high quality clinical databases. This is made difficult by the fact that the use of paper collection forms is still diffuse.

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Carmine Zoccali  
Understanding negative trials in nephrology
From Christoph Wanner, member of the ERA-EDTA Registry Committee

Observational studies have dominated clinical nephrology for many years like they dominate the literature in general. Even if observational studies are extremely valuable, their main disadvan­tage is that they may, more than trials, suffer from confounding. The recognition of the rapidly growing number of people with chronic kidney disease (up to 16 % of the US population) leads to the need of evaluating treatment strategies for such disease. In order to over­come the drawbacks of observational studies, during recent years in­vestigators networked successfully (i.e. Collaborative Study Group, GISEN, EUVAS) and produced a number of early randomized con­trolled trials (RCTs).

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Christoph Wanner

Report from the QUEST electronic data extraction group

From Reinhard Kramar, member of the ERA-EDTA Registry Committee

Data collection in a uniform way and under standardised conditions is a prerequisite for any solid clinical research. With­in the ambitious project of the QUEST initiative the electronic data extraction group assembled 3 times in Toledo, Istanbul and from 11-12 March 2006 in Vienna bringing together representatives from major regional and national registries throughout Europe and experts in the field of communi­cation. The last meeting has seen a major breakthrough. Experts from the ERA-EDTA community, nominated by national societies and many of them co-authors of the current European best practice guidelines have been asked to derive variables (biometric, clinical and laboratory values) that could be seen as core clinical performance indicators (CPI).

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Members of the QUEST electronic data extraction group
A message of thanks to everyone who contributed to the ERA-EDTA Mini Questionnaire, a cohort study to predict survival on RRT

From Keith Simpson, Study Coordinator


An accurate prediction of survival is extremely useful when helping patients to understand the likely benefits of RRT, but in the mid nineteen nineties published prediction models showed low predictive accuracy. By starting this study we have attempted to over come limitations in previous studies by comparing the results of conventional and novel statistical modelling techniques. All participating renal centres in the ERA EDTA region were invited to join this registry project. The lack of a reliable historic “European” database for this effort was countered by using a mini questionnaire to identify a cohort of patients who died in the months of February 1997 or 1998 and another who started RRT during the same periods.

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Keith Simpson

Confounding Bias

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


In many pa­pers that de­scribe the anal­ysis of patient outcomes the authors make use of statis­tical models which ‘adjust’ for confound­ing variables. In this note we will explain in short what con­founding is and how we may address it. Confounding can be described as a “mix­ing of effects”. This may occur if we study the relationship between an exposure E and a disease D (Figure 1) which might be confounded by a factor C.

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Kitty Jager
Registry activities during the XLIII ERA-EDTA Congress in Glasgow (July 15-18, 2006)
16 July - ERA-EDTA Registry Symposium. Hall 1. 10.30 to 11.30 a.m.
17 July - Hands-on Course - Clinical Epidemiology. Hall Forth. 10.30 to 12.00 a.m.
More information available at www.eraedta2006.org
Forthcoming issues
Newsletter 10, October 2006