ERA-EDTA President

Jorge B. Cannata-Andia

Oviedo, Spain

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, Scotland

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

Gita Guggenheim
contributors map

Contributions as of July 1, 2007

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
neprhoquest newsletter

Stage 4-5 CKD Registries: a challenge to take

From Carmine Zoccali, ERA-EDTA Registry Chairman


 Carmine Zoccali

Chronic kidney disease (CKD) is now recognized as a worldwide public health problem.
The KDOQI CKD staging system is a formidable instrument for deploying interventions calibrated to the various CKD stages and also a useful intellectual framework for stimulating well focused research on kidney diseases. Stage 4 (severe CKD) is a critical phase in this staging system because it is precisely at this phase that the renal team should prepare the patient and his family for kidney replacement therapy. Observational studies in various European countries indicate an increasing stage 4-CKD prevalence coupled with poor outcomes and concerning costs. Unfortunately, notwithstanding tantalising efforts by nephrologists for addressing attention of other doctors and health authorities to the risk posed by moderate and severe CKD, late referral still remains a problem in most countries. This is unfortunate because the adverse outcomes of kidney failure, cardiovascular
disease and the short life expectancy of CKD patients can be modified by available treatments and by streamlining their access to renal units. Many countries have registries for patients treated by dialysis and transplantation.


Read more


ABC of Epidemiology – Kidney International

From Kitty Jager, ERA-EDTA Registry Managing Director and Carmine Zoccali, ERA-EDTA Registry Chairman

The ERA-EDTA ‘Introductory courses on Epidemiology’ have found their way to the nephrology literature. The course lectures and hands-on sessions are being transferred into a series ‘ABC of Epidemiology’ for Kidney International. By now 7 papers have been published by the authors group including ERA-EDTA Registry Office staff (AMC, The Netherlands), Registry Committee Members, epidemiologists and biostatisticians from CNR Reggio Calabria (Italy) and LUMC (The Netherlands).
The articles are specifically targeted at an audience of nephrologists and nephrology researchers and discuss epidemiological concepts at an introductory to intermediate level.
In our experience such concepts are better understood if they are presented in the context of the nephrology literature. The fact that a thorough knowledge of renal pathophysiology is needed to apply epidemiological methods in the correct way makes learning even more attractive.

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       Kitty J. Jager
Study design: RCT or observational study?

From Marlies Noordzij, ERA-EDTA Registry epidemiologist


In clinical epidemiology several study designs are applied to investigate relationships between an exposure (medical treatment, environmental factor, etc.) and an outcome (development of a disease, death, etc.). Randomized Controlled Trials (RCTs) on the one hand, and observational studies such as cohort and casecontrol studies on the other hand, are important study designs that are used in the field of nephrology research.
To study the effect of therapy or other interventions, the RCT is an almost unbeatable standard in research: the problems that may occur in the other study designs do not exist or to a lesser extent using an RCT.

Read more

Marlies Noordzij
Registry activities during the XLV ERA-EDTA Congress in Stockholm, Sweden (May 10-13, 2008)
11 May - 8.00 to 9.30 a.m. – ERA-EDTA Registry Symposium.
12 May – 8.00 to 9.30 a.m. - Compact Primer: Observational studies in Nephrology - under STROBE scrutiny.
More information available at www.eraedta2008.org
Forthcoming issues
Newsletter 13, Autumn 2008
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era-edta renewal membership
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