ERA-EDTA President

Francesco Locatelli

Lecco, Italy

  
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
   
Staff
   

Kitty Jager

Managing Director
   

Paul van Dijk

Medical Information scientist
   

Ronald Cornet

Senior IT Specialist
   

Friedo Dekker

Senior Epidemiologist
   

Vianda Stel

Epidemiologist
   

Sabine Bos

Datamanager
   
Gita Guggenheim
Secretary
   
 
Contributions as of May 15, 2004

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
 
The QUEST initiative and the new mission of the ERA-EDTA Registry
from Carmine Zoccali, Chairman of the ERA-EDTA Registry

In previous newsletters I delineated the QUEST initiative of the ERA-EDTA. QUEST (QUality European STudies) is not a research project on its own but an ambitious framework aimed at collecting data on Clinical Performance Measures, monitor guidelines adherence and form the basis for establishing well pondered benchmarks. An important goal of the project is that of producing a large, high quality clinical data base allowing all investigators to perform specific projects in the broad area of epidemiology of kidney diseases.

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Carmine Zoccali
 

Report on the ERA-EDTA introductory course on Epidemiology

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

In the middle of September a nice hotel in the Roman hills was the venue of the first introductory course on epidemiology, one of the ERA-EDTA CME courses. Twenty-three participants from nine countries attended the two-day course, in which lectures and hands-on sessions provided an orientation to epidemiology. Members of the ERA-EDTA Registry committee, including nephrologists who are experienced in epidemiological research, together with epidemiologists and medical information scientists from the ERA-EDTA Registry office, tried to relate theory to examples from nephrology.

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Computer Laboratory
 
The ERA-EDTA Registry database in five steps
From Vianda Stel, epidemiologist, and Paul van Dijk, medical information scientist, members of the ERA-EDTA Registry staff

Currently, the ERA-EDTA Registry database consists of data on almost 640.000 patients. These data are received from 14 national and regional registries. Variables included in the database are: a patient identifier, date of birth, gender, primary renal disease, date of first RRT, history of RRT with dates and changes of modality, treatment centre, date and cause of death, and information concerning transfer from or to other renal registries. With these data, the registry performs statistical analyses for annual reports and a number of studies.

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The COSMOS Project
From Jorge B Cannata-Andía, ERA-EDTA Secretary-Treasurer and Chairman and Principal Investigator of COSMOS Project

The derangements in bone and mineral metabolism are associated with increased morbidity and mortality. Poorly-controlled parathyroid function contributes not only to bone problems but also to an increase in the risk of vascular and valvular calcifications, with influences in the cardiovascular death risk in the dialysis population. These facts emphasis the need for more careful monitoring and better management of secondary hyperparathyroidism. Unfortunately most of the clinical studies performed on renal osteodystrophy have been conducted on specific populations but these results do not reflect what happens in the current management of renal osteodystrophy in Europe.

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Jorge B Cannata Andia
 
Notes in Epidemiology and Biostatistics: Correlation and Regression Analysis

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

Correlation and regression analysis are widely used in medical research. Both describe the relationship between two variables. Although correlation and regression are mathematically related, they serve different purposes.

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Announcements
The "Third Biostatistics and Epidemiology Course", an ERA-EDTA CME course, will be organised in Gdansk, Poland on 21-22 November 2004. Information is available on e-mail address: bolo@amg.gda.pl and nerka@amg.gda.pl
  
Forthcoming issues
Newsletter 4, December 2004