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 June 1, 2003

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, J.2-254
P.O.Box 22700
1100 DE Amsterdam
The Netherlands
 
Visiting address
Meibergdreef 9
1105AZ Amsterdam
The Netherlands
 
Phone: +31 20 566 7637
Fax: +31 20 691 9840
E-mail: erareg@amc.uva.nl
 
 
Transition of Registries to High Quality Clinical Databases: The Challenge of the Years to Come
from Carmine Zoccali, Chairman of the ERA-EDTA Registry

The demand for articulated information to scientific societies from members, medical and academic associations and health authorities is continuously increasing. Major scientific societies are taking the challenge by organizing consulting groups and official bodies, like renal registries, that provide appropriate and timely responses to such demand. It is not only the sheer amount of information being requested, but also the type of information and the very scope of the request that is changing. From simple demographic data, the request is now expanded to clinical data in an evolutionary perspective.

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Carmine Zoccali
 
Notes in Epidemiology and Biostatistics: Incidence, Prevalence and their Relationship
from Kitty Jager, Managing Director of the ERA-EDTA Registry

In the first issue of this newsletter we discussed risk as a measure of disease frequency. Risk (synonyms: incidence proportion, cumulative incidence) was defined as the number of subjects developing a disease or another health outcome divided by the number of subjects followed for the time period.

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Kitty Jager
 
From Paediatric to Adult Registries: The Urgent Need to Solve Practical Problems
from Jane Tizard and Bert van der Heijden
ESPN Representatives in the ERA-EDTA Registry

Paediatric nephrology is a high intensity but relatively low volume specialty. The number of children on renal replacement therapy is increasing significantly but absolute numbers remain low compared with adult practice. It is therefore even more important to develop European collaboration in collecting and reporting data on children with established renal failure (ERF) to further develop and improve clinical practice particularly in rare conditions.

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Jane Tizard and Paul van Dijk
   
QUEST
QUality European STudy, a Project in Progression
National and Regional Registries can play an important role in the process of quality assurance depending on the amount of clinical data they collect from individual patients. The ERA-EDTA Registry has made progress in preparing a project to list the quality assurance initiatives at a national level and to see which parties and how they are involved in these initiatives. A survey has been prepared and will be sent out soon aiming at the National Societies in supporting the idea on how to organize their own quality assurance systems and adapt them to their needs and circumstances. Both education and resources are the basis of quality in daily care. Different levels of training in nephrology together with dose of nurses and doctors per time may be one factor for the different outcomes in between various National or Regional Registries. A survey is aiming to provide the database and to harmonize processes in obtaining quality assurance in the future.
   
QuaSi-Niere, the German Renal Registry Prepares for Extending its Projects
from H.-J. Schober-Halstenberg, Managing Director of the German Registry
The German Registry of QuaSi-Niere started as an initiative of renal physicians, paediatricians and patient organisations and resumed the mid 80’ies stagnant international cooperation in 1994. Today QuaSi-Niere oversees renal replacement therapy (RRT) in the complete 81,6 million population making all reports and additional information available to the renal community worldwide.
   
Current projects of the ERA-EDTA Registry:
I. Co-morbidity as a prognostic factor in renal replacement therapy
From Vianda Stel, epidemiologist and member of the ERA-EDTA Registry staff

Within the European Union there exist substantial differences in the survival of patients with end stage renal disease (ESRD). The prognosis of these patients is known to be affected by a number of factors, including demographics, co-morbidity and treatment modality. However, among European countries, little is known about differences in co-morbid conditions and their effect on prognosis.

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Vianda Stel
 
II. An Introductory Course of Epidemiology will be held in Rome, September 11-13, 2004
Education is central to the ERA-EDTA Registry and its staff in the future. This first course chaired by the President of the ERA-EDTA and the Chairman of the Registry is planned for 30 attendees (information available on www.era-edta.org).
   
Announcements
Registry activities during the ERA-EDTA Congress in Lisbon (May 15-18, 2004):
•  15 May - Annual meeting for national and regional renal registries. The time schedule and the programme are available on www.era-edta-reg.org
•  16 May - ERA-EDTA Registry Annual Report. Main Hall 10.00 to 11.30 a.m.
•  17 May – Symposium ‘Clinical Epidemiology in Clinical Nephrology‘ from 13.30 to 15.00 p.m., Hall 1.
 
Forthcoming issues
Newsletter 3, August 2004
Newsletter 4, November 2004