ERA-EDTA Registry Newsletter 11

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

Staff

Kitty Jager

Managing Director

Paul van Dijk

Medical Information scientist

Ronald Cornet

Senior IT Specialist

Friedo Dekker

Senior Epidemiologist

Vianda Stel

Epidemiologist

Anneke Kramer

Medical Information scientist

Annick van den Broek

Datamanager

Gita Guggenheim

Secretary

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

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Report on the 3rd QUEST Convention in Vienna

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

zoccali

Carmine Zoccali

For the second year in a row the QUEST convention was held in the heart of Europe, in Vienna, one of the most elegant European capitals. We started our journey in much different ambience, in a nice medieval city of Spain full of history, Toledo. Toledo is at the border of the region of La Mancha which is famous because of Don Quixote, a fascinating character of world literature. Yet, however fascinating, the profile of Don Quixote is not the ideal testimonial for a new venture. In reality what we set in motion in Toledo was not a specific project but an initiative, i.e. not a precise project but “…our readiness to embark on new ventures, a first step of a series of actions…” which, in a way, is the typical Don Quixote attitude. We needed an initiative rather than a specific project because our aim was that of reversing the perception that the ERA EDTA was a centralised, secluded structure. In other words we needed to go from a top-down to a bottom up approach.

Read more

The new ESPN Registry: an attempt to improve the collection of paediatric RRT data and stimulate European paediatric research collaboration

From Enrico Verrina and Jane Tizard, ESPN representatives in the ERA-EDTA Registry

Over the past 6 years all analyses on paediatric patients were based on the limited data set collected by the ERA-EDTA Registry from national and regional registries, currently including more than 2600 paediatric RRT patients. In addition, a number of separate paediatric renal registries have sent data to Amsterdam on more than 2000 patients to be used for joint analysis. Since February 1st, 2007, however, the European Society of Paediatric Nephrology (ESPN) has started a separate registry in order to be able to collect more detailed paediatric data from a larger number of countries.

Read more

Enrico Verrina

Scientific Registry News – one abstract and some references to interesting papers using registry data

Paul van Dijk, Medical Informatician of the ERA-EDTA Registry

Abstract

In Europe there is considerable variation in mortality on renal replacement therapy (RRT). The causes of this variation are still poorly understood. We hypothesized that differences in mortality in the general population contribute to differences in mortality on RRT. To evaluate this relationship, we studied general population statistics obtained from Eurostat and the individual data of 67,692 patients on RRT from 15 national and regional renal registries. These 15 registries were divided into two geographical regions: North and South Europe.

Read more

Paul van Dijk

PhD Thesis Paul van Dijk
From Kitty Jager, ERA-EDTA Registry Managing Director

On April 5, 2007 Paul van Dijk successfully defended his PhD thesis ‘Renal Epidemiology in Europe – a Registry Perspective’ in the presence of the PhD graduation committee. The thesis includes a part of the papers published by the Registry in the past few years. Paul received his doctorate, on which he was congratulated by many colleagues. This was the first PhD thesis based on the data of the ERA-EDTA Registry and we hope that many more will follow.

	The PhD Graduation Committee in action

A series of articles on Epidemiology in Kidney International
From Carmine Zoccali, ERA-EDTA Registry Chairman and Kitty Jager, ERA-EDTA Registry Managing Director

Many renal physicians consider Epidemiology as the unattractive science of Renal Registries that is either too simple to warrant serious attention or too difficult to understand. Yet, clinical epidemiology is the established basic science to clinical medicine and knowledge about it will not only improve the performance of medical research, but also the understanding of professional literature. This has been well understood by the many nephrologists and nephrology researchers who applied to participate in the ERA-EDTA ‘Introductory courses in Epidemiology’ that are organized twice a year since 2004. So far, more than 150 colleagues successfully completed the course and some of them still maintain contacts with the faculty. Read more
	Kitty J. Jager

Announcements

The Seventh ERA-EDTA Epidemiology Course will be held in Leiden (The Netherlands) on September 22-24, 2007
	On September 22-24, 2007 the ERA-EDTA Registry organizes the seventh ERA-EDTA Epidemiology Course in Leiden, The Netherlands. Ton Rabelink and Friedo Dekker are the hosts of this course. On the basis of surveys among the participants of the six previous courses, these courses can be considered a true success. The application procedure for the Leiden course has started early June 2007 and the deadline for application is July 1, 2007. Course application forms can be downloaded from www.era-edta-reg.org. More information on this course is available on www.ndt-educational.org/leiden2007.asp.
Leiden - Rapenburg

Registry activities during the XLIV ERA-EDTA Congress in Barcelona (June 21-24, 2007)

22 June - 10.30 to 12.00 a.m. - ERA-EDTA Registry Symposium.
23 June - 10.30 to 12.00 a.m. - Compact Primers and Updates for the Nephrologist - Clinical Epidemiology.
More information available at www.eraedta2007.org

Poll

We would like to have your opinion on this Newsletter together with your suggestions for improvement. Please, visit our poll at www.era-edta.org/eraedtaregistrypoll.htm.

Forthcoming issues

Newsletter 11, April 2007

Newsletter 12, June 2007

Newsletter 13, October 2007

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