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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
 
TO DOWNLOAD AND PRINT THE PDF VERSION OF THIS NEWSLETTER CLICK HERE
   

QUEST Project approved by PHEA (Public Health Executive Agency of the European Union)

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

zoccali

 Carmine Zoccali

jager

 Kitty J. Jager

In general, renal registries in Europe collect very basic patient data. A number of National or Regional Renal Societies have successfully extended the scope of their Registries or are in the process of doing so, but until recently the information included in these databases was mainly used for dialysis centres planning and to produce information on patient outcomes. On average, EU countries spend about 3% of their overall health budget on renal replacement therapies. Therefore monitoring the quality of care is fundamental for professional, financial and ethical reasons. In fact, the European scenario is rapidly changing and patients, health authorities and doctors now increasingly demand information on the quality of care of dialysis and transplant patients.

The European Renal Association-European Dialysis and Transplant Association (ERA-EDTA) has made major efforts to produce and promote evidence-based clinical practice guidelines for dialysis and transplant patients, the European Best Practice Guidelines (EBPG). These well conceived guidelines have been widely “disseminated”, but their actual impact upon clinical practice still remains a black box in the majority of EU countries. Producing solid databases allowing direct comparisons of EBPG goals with actual clinical achievements is the basis for quality improvement programs. There is a widely perceived need of a gradual transition of Registries toward systems capable of sustaining these programs and a few registries have already successfully extended the breadth of their data collection to start quality improvement programs.

In 2004 the ERA-EDTA Registry put these problems at central stage in the ongoing collaboration with national Registries and the QUality European STudies (QUEST) initiative is an important result of this interaction. An essential step of this last initiative is that of establishing standards for high quality data collection. This is a tantalising task which requires important investment in human and financial resources.

 

Read more

   
      

A Summary of the QUEST Calcium-Phosphate-Bone Working Group

From Dimitrios Memmos, on behalf of the Working Group.

The task of the first QUEST Convention, in Toledo, was to set up a large clinical database, including the most important parameters in the area of calcium and phosphate metabolism and to formulate new research protocols. Our proposed clinical performance measures (what to collect, how and when) on calcium and phosphate were: A. Demographic data, B. Clinical information, events and outcomes. C. Biochemical data and D. Management data. There was a separation of these data to (a): Basic essential (b): More complete-expanded data. The parameters of (b) were not included in the present study.
Possible research protocols are: Collection of calcium and phosphate metabolism parameters in patients on haemodialysis or CAPD, in patients with stage 3 and 4 chronic kidney disease and in the transplant population.

Read more

messatielemansmemmos
  P. Messa, C. Tielemans and D. Memmos of the QUEST  Calcium-Phosphate-Bone Working Group
 
   
 
Expanding the evidence base, a call from 150 years ago

From David Ansell, ERA-EDTA Registry Committee Member

 
ansell

In the 1850s Florence Nightingale argued strongly that only by collecting and analysing pertinent data was it possible to determine the extent to which hospitals and other public institutions were effective in serving those who relied on their help.

"In attempting to arrive at the truth, I have applied everywhere for information, but in scarcely an instance have I been able to obtain hospital records fit for any purpose of comparison. If they could be obtained, they would enable us to decide many other questions... They would show [the taxpayers] how their money was being spent [and] what amount of good was really being done with it..." (Florence Nightingale - Notes on Hospitals, 1859).

Read more

David Ansell
   
Announcements
   

The sixth ERA-EDTA Epidemiology Course will be held in Thessaloniki (Greece) on February 10-12, 2007.

thessaloniki tower

On February 10-12, 2007 the ERA-EDTA Registry organises the sixth ERA-EDTA Epidemiology Course in Thessaloniki, Greece. Dimitri Tsakiris is the host of this course. The first five editions were held in Rome, Italy (September 2004), Toledo, Spain (March 2005), Würzburg, Germany (October 2005), Salzburg, Austria (March 2006) and Stockholm (September 2006).

On the basis of surveys among course participants these courses can be considered to be a true success.

THE COURSE IS FULLY BOOKED

Thessaloniki, White Tower
  
More information on this course are available on
http://www.ndt-educational.org/thessaloniki2007.asp
   
The seventh ERA-EDTA Epidemiology Course will be held in Leiden (The Netherlands) on September 22-24, 2007.
The application procedure will start in June 2007. More information will be available soon on the ERA-EDTA Website (see Education and then CME Courses).
    
          
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
 
     
Forthcoming issues
Newsletter 11, April 2007
Newsletter 12, June 2007
Newsletter 13, October 2007
 
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