ERA-EDTA President
Raymond Vanholder
Gent, Belgium
Registry Committee
Christoph Wanner (Chairman)
Wuerzburg, Germany
David Ansell
Bristol, United Kingdom
Christian Combe
Bordeaux, France
Liliana Garneata
Bucharest, Romania
Faiçal Jarraya
Sfax, Tunisia
Pietro Ravani
Cremona, Italy
Ramon Saracho
Santa Cruz de Tenerife, Spain
Franz Schaefer
Heidelberg, Germany
Staffan Schön
Stockholm, Sweden
Enrico Verrina
Genoa, Italy
Kitty Jager
Managing Director, Senior Epidemiologist
Ronald Cornet
Senior IT Specialist
Friedo Dekker
Senior Epidemiologist
Vianda Stel
Marlies Noordzij
Karlijn van Stralen
Anneke Kramer
Medical Information Scientist
Moniek van de Luijtgaarden
Mark Titulaer
Data manager
contributors map
Contributions as of June 1, 2011
red registries contributing individual patient data to the ERA-EDTA registry database
orange registries sending selected aggregated data to be included in the annual report
white 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

PhD defense Anneke Kramer


On December 22, 2011 Anneke Kramer will defend her PhD thesis entitled ‘Epidemiology and outcomes of renal replacement therapy: results from the ERA-EDTA Registry’. This thesis includes papers on (1) the epidemiology of chronic kidney disease and renal replacement therapy within Europe over the past two decades, (2) the association of general population characteristics, macroeconomic determinants and renal service indicators with the incidence of renal replacement therapy across countries around the world; and on (3) the association of patient and treatment characteristics and macroeconomic determinants with survival in children and adults on renal replacement therapy.

The defense will take place in Amsterdam in the presence of the PhD graduation committee

phd Kramer

Anneke Kramer

Update of the ESPN/ERA-EDTA Registry

From Karlijn van Stralen, ESPN/ERA-EDTA Registry Coordinator


Since 2007 the ESPN/ERA-EDTA Registry has collected data regarding all children on renal replacement therapy in Europe. Recently the 2011 annual report of the Registry has been published. At this moment data are available from 32 countries, providing information on more than 10,000 children.
Four papers were published: one on hypertension in children on renal replacement therapy (Kidney International), one on the improvement of prognosis in cystinosis patients (CJASN), one on a problem with the generally used method for defining hypertension in severely growth retarded children (Pediatric Nephrology) and an educational review on the epidemiology of chronic kidney disease in children (Pediatric Nephrology).
Secondly, this year two researchers visited the AMC. Jérôme Harambat from Bordeaux (France) started in November 2010 for a one-year internship. He received a grant from the QUEST fund and is working on many different projects within the Registry. One of these projects is described elsewhere in this newsletter. Furthermore, in July, Elke Wühl from Heidelberg (Germany) worked on a project on congenital anomalies of the kidney and urinary tract using data both from the ERA-EDTA Registry and the ESPN/ERA-EDTA Registry. She received a fellowship from the ERA-EDTA to support this project.
Finally, in order to facilitate data collection for the ESPN/ERA-EDTA registry, a new internet-based data collection tool was launched. This tool will assist those entering patient data. It is, however, still possible to send us complete datasets.
We would like to thank all collaborators in the different countries for sending us data and hope that by working together in research projects, we will improve pediatric nephrology care in Europe. If you are interested in performing research on the registry or would like to know more about participating in the ESPN/ERA-EDTA registry, please do not hesitate to contact us via K.J.vanStralen@amc.uva.nl.

Karlijn van Stralen

Policies and practices of paediatric kidney transplantation: what influences disparities in access to transplantation for children across Europe

From Jérôme Harambat, paediatric nephrologist, for the ESPN/ERA-EDTA Registry

Kidney transplantation (KTx) is widely considered the treatment of choice for children with ESRD. There is ongoing debate about how to optimise the use of scarce kidneys while maintaining equity of access to KTx. One of the most accepted allocation policies is the priority given to children waiting for a transplant who deserve special consideration because the long waiting time for KTx would result in unacceptable consequences on growth, psychosocial development and quality of life. However, paediatric kidney allocation policies and transplantation practices may vary according to the country. These variations may lead to unequal access to KTx within Europe and therefore to differences in morbidity and survival in children with ESRD.
In 2011, a survey was distributed among renal registry representatives in 38 European countries aiming to collect information on organizational aspects, paediatric priority and paediatric KTx activity in 2008. Secondary data sources were the ESPN/ERA-EDTA Registry, Eurostat, WHO and International Registry of Organ Donation and Transplantation (IRODaT) websites.
Responses were received from 32 countries (paediatric population covered 158 millions). The striking findings of the study are the considerable differences in practices and access to paediatric KTx across Europe. The median incidence rate of KTx was 5.7 per million children population (pmcp), ranging from 0 to 13.5 between countries, with a median proportion of 17% (interquartile range 2-29%) performed preemptively and a median proportion of living donor KTx of 43% (interquartile range 10-52%). The median percentage of prevalent children on RRT with a functioning graft was 62% (interquartile range 39-77%) (Figure 1). Access to KTx as defined as the percentage of paediatric RRT patients with a functioning graft on 31st December 2008, was influenced by non-medical factors such as the Gross Domestic Product per capita, and medical factors including national deceased donation rate, paediatric priority category, and living donor paediatric KTx rate.








        Jérôme Harambat
Figure 1

Figure 1: Percentage of prevalent RRT children <18 years with a functioning kidney graft on December 31, 2008 in Europe


ERA-EDTA Registry publications since June 2011

Published with Registry authorship
  1. Noordzij M, Zoccali C, Dekker FW, Jager KJ. Adding up the evidence: systematic reviews and meta-analyses. Nephron Clin Pract. 2011; 119: c310-c316.

  2. van den Beukel TO, Verduijn M, le Cessie S, Jager KJ, Boeschoten EW, Krediet RT, Siegert CE, Honig A, Dekker FW: The role of psychosocial factors in ethnic differences in survival on dialysis in the Netherlands. Nephrol Dial Transplant. 2011 Nov 25 [Epub ahead of print].

  3. Stel VS, Dekker FW, Tripepi G, Zoccali C, Jager KJ. Survival Analysis II: Cox Regression. Nephron Clin Pract. 2011; 119: c255-c260.

  4. Van Stralen KJ, Emma F, Jager KJ, Verrina E, Schaefer F, Laube GF, Lewis MA, Levtchenko EN. Improvement in the Renal Prognosis in Nephropathic Cystinosis. Clin J Am Soc Nephrol. 2011; 6: 2485-2491.

  5. Kramer A, Stel VS, Geskus RB, Tizard EJ, Verrina E, Schaefer F, Heaf JG, Kramar R, Krischock L, Leivestad T, Pálsson R, Ravani P, Jager KJ. The effect of timing of the first kidney transplantation on survival in children initiating renal replacement therapy. Nephrol Dial Transplant. 2011 Aug 23. [Epub ahead of print]

  6. Verduijn M, Jager KJ, Zoccali C, Dekker FW. Genetic Association Studies: Discovery of the Genetic Basis of Renal Disease. Nephron Clin Pract. 2011; 119: c236-c239.

  7. Kramer AM, van Stralen KJ, Jager KJ, Schaefer F, Verrina E, Seeman T, Lewis MA, Boehm M, Simonetti GD, Novljan G, Groothoff JW. Demographics of blood pressure and hypertension in children on renal replacement therapy in Europe. Kidney Int. 2011; 80: 1092–1098.

  8. van der Veer SN, Jager KJ, Nache AM, Richardson D, Hegarty J, Couchoud C, de Keizer NF, Tomson CR. Translating knowledge on best practice into improving quality of RRT care: a systematic reviewof implementation strategies. Kidney Int. 2011; 80: 1021-1034.

  9. Visser A, Sunaert P, Franssen CF, Van Biesen W, Reijneveld SA, Jager KJ, de Jong PE, Izaks GJ, Dijkstra GJ, Gansevoort RT. Exploration of the difference in incidence of renal replacement therapy in elderly patients in Flanders and The Netherlands--a comparison of referral policy. Nephrol Dial Transplant. 2011 Jul 15. [Epub ahead of print]

  10. de Jager DJ, de Mutsert R, Jager KJ, Zoccali C, Dekker FW. Reporting of Interaction. Nephron Clin Pract. 2011; 119: c158-c161.

  11. de Mutsert R, de Jager DJ, Jager KJ, Zoccali C, Dekker FW. Interaction on an Additive Scale. Nephron Clin Pract. 2011; 119: c154-c157.

  12. Carrero JJ, de Jager DJ, Verduijn M, Ravani P, De Meester J, Heaf JG, Finne P, Hoitsma AJ, Pascual J, Jarraya F, Reisaeter AV, Collart F, Dekker FW, Jager KJ. Cardiovascular and noncardiovascular mortality among men and women starting dialysis. Clin J Am Soc Nephrol. 2011; 6: 1722-1730.

  13. Stel VS, Dekker FW, Tripepi G, Zoccali C, Jager KJ. Survival Analysis I: The Kaplan-Meier method. Nephron Clin Pract. 2011; 119: c83-c88.

  14. Visser A, Noordzij M, Gansevoort RT, Van Biesen W, Reijneveld SA, Jager KJ, de Jong PE, Izaks GJ, Dijkstra GJ, De Meester J, Hoitsma AJ, Franssen CF. Exploration of the difference in incidence of renal replacement therapy between Flanders and the Netherlands - investigation of explanatory variables. Nephrol Dial Transplant. 2011 Jun 9. [Epub ahead of print]

  15. Tattersall J, Dekker FW, Heimbürger O, Jager KJ, Lameire N, Lindley E, Van Biesen W, Vanholder R, Zoccali C; on behalf of the ERBP Advisory board. When to start dialysis: updated guidance following publication of the Initiating Dialysis Early and Late (IDEAL) study. Nephrol Dial Transplant 2011; 26: 2082-2086.
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