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Demographics of paediatric renal replacement therapy in Europe: a report of the ESPN/ERA–EDTA registry

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Abstract

Background

The ESPN/ERA–EDTA Registry collects data on European children with end-stage renal disease receiving renal replacement therapy (RRT) who are listed on national and regional renal registries in Europe. In this paper we report on the analysis of demographic data collected from 2009 to 2011.

Methods

Data on primary renal disease, incidence, prevalence, 4-year survival, transplantation rate and causes of death in paediatric patients receiving RRT were extracted from the ESPN/ERA–EDTA Registry for 37 European countries.

Results

The incidence of RRT in paediatric patients in Europe during the study period was 5.5 cases per million age-related population (pmarp) in patients aged 0–14 years and varied markedly between countries (interquartile range 3.4–7.0 years). The prevalence of RRT was 27.9 pmarp and increased with age, with 67 % of prevalent patients living with a functioning graft. The probability of receiving a transplant within 4 years was 76.9 % and was lowest in patients aged 0–4 years (68.9 %). Mortality in paediatric patients treated with RRT was 55-fold higher than that of the general EU paediatric population. Overall survival at 4 years was 93.7 %, with the poorest survival in patients aged 0–4 years and in patients starting on dialysis. Infections (19.9 %) were the primary cause of death in European paediatric RRT patients.

Conclusion

Considerable variation exists in the current demographics of children treated with RRT across Europe.

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Acknowledgments

We would like to thank the patients, their parents and the staff of all the dialysis and transplant units who have contributed data via their national registries and contact persons. We also would like to thank R. Coppo, D. Haffner, J. Harambat and C. Stefanidis for being members of the ESPN/ERA-EDTA Registry Committee, D Shitza, R Kramar, R Oberbauer, S Baiko, A Sukalo, K van Hoeck, F Collart, JM des Grottes, D Pokrajac, H. Resić, B Prnjavorac, D Roussinov, D Batinić, M Lemac, J Slavicek, T Seeman, K Vondrak, JG Heaf, U Toots, P Finne, C Grönhagen-Riska, C Couchoud, M Lasalle, E Sahpazova, G Gersdorf, C Barth, C Scholz, B Tönshoff G Ioannidis, A Kapogiannis, F Papachristou, G Reusz, S Túri, L Szabó, T Szabó, Zs Györke, E Kis, R Palsson, V Edvardsson, B Gianoglio, T de Palo, C Pecoraro, S Picca, S Testa, E Vidal, F Mencarelli, A Jankauskiene, B Pundziene, V Said-Conti, S Gatcan, O Berbeca, N Zaikova, S Pavićević, T Leivestad, A Bjerre, A Zurowska, I Zagozdzon, C Mota, M Almeida, C Afonso, G Mircescu, L Garneata, E Podgoreanu, EA Molchanova, NA Tomilina, BT Bikbov, M Kostic, A Peco-Antic, S Puric, D Kruscic, B Spasojevic-Dimitrijeva, G Milosecski-Lomic D Paripovic, L Podracka, G Kolvek, J Buturovic-Ponikvar, G Novljan, N Battelino, A Alonso Melgar and the Spanish Pediatric Registry, S Schön, KG Prütz, A Seeberger, L Backmän, M Evans, CE Kuenhi, E Maurer, G Laube, G Simometi, A Hoitsma, A Hemke and all centers participating in the RichQ study; R Topaloglu, A Duzova, D Ivanov, M Sinha and the staff of the UK renal registry for contributing data to the ESPN/ERA-EDTA Registry. The ESPN/ERA–EDTA registry is funded by the European Society of Pediatric Nephrology (ESPN), the European Renal Association and European Dialysis and Transplant Association (ERA–EDTA). This publication arises from the project of the ESPN/ERA-EDTA registry (ESPN_FY2013) which has received funding from the European Union, in the framework of the Health programme.

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Authors and Affiliations

  1. Department of Medical Informatics, Academic Medical Center, Amsterdam, The Netherlands

    Nicholas Chesnaye, Marjolein Bonthuis, Kitty J. Jager & Karlijn J. Van Stralen

  2. Department of Paediatric Nephrology, University of Heidelberg Center for Pediatrics and Adolescent Medicine, Heidelberg, Germany

    Franz Schaefer

  3. Department of Pediatric Nephrology and Department of Pediatrics, Emma Children’s Hospital AMC, Amsterdam, The Netherlands

    Jaap W. Groothoff

  4. Nephrology, Dialysis and Transplantation Unit, G. Gaslini Institute, Genoa, Italy

    Enrico Verrina

  5. Department of Nephrology, University of Copenhagen Herlev Hospital, Herlev, Denmark

    James G. Heaf

  6. Santariskiu Klinikos, Vilnius University Hospital, Vilnius University, Vilnius, Lithuania

    Augustina Jankauskiene & Viktorija Lukosiene

  7. Russian Pediatric Registry of RRT, Department of Kidney Transplantation, Russian Children’s Clinical Hospital, Moscow, Russia

    Elena A. Molchanova

  8. Department of Pediatric Nephrology, Centro Hospitalar do Porto, Porto, Portugal

    Conceicao Mota

  9. Department of Nephrology, University Children’s Hospital, Faculty of Medicine, University of Belgrade, Belgrade, Serbia

    Amira Peco-Antić

  10. Department of Paediatrics, University of Ancona, Ancona, Italy

    Ilse-Maria Ratsch

  11. Department of Pediatrics, Oslo University Hospital Rikshospitalet, Oslo, Norway

    Anna Bjerre

  12. Department of Pediatric Nephrology, Pediatric University Hospital, Sofia, Bulgaria

    Dimitar L. Roussinov

  13. Pediatric Nephrology & Dialysis Center, Minsk, Belarus

    Alexander Sukalo

  14. Department of Pediatric Nephrology, Hacettepe University Faculty of Medicine Children’s Hospital, Ankara, Turkey

    Rezan Topaloglu

  15. Department of Paediatric Nephrology, University Hospital Antwerp, Antwerp, Belgium

    Koen Van Hoeck

  16. Department Paediatrics, Nephrology & Hypertension, Medical University of Gdansk, Gdansk, Poland

    Ilona Zagozdzon

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  1. Nicholas Chesnaye
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  2. Marjolein Bonthuis
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  3. Franz Schaefer
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  4. Jaap W. Groothoff
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  10. Conceicao Mota
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  11. Amira Peco-Antić
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  12. Ilse-Maria Ratsch
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  13. Anna Bjerre
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  14. Dimitar L. Roussinov
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  15. Alexander Sukalo
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  16. Rezan Topaloglu
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  17. Koen Van Hoeck
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  18. Ilona Zagozdzon
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  19. Kitty J. Jager
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  20. Karlijn J. Van Stralen
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on behalf of theESPN/ERA–EDTA registry

Corresponding author

Correspondence to Karlijn J. Van Stralen.

Additional information

Nicholas Chesnaye and Marjolein Bonthuis contributed equally to the manuscript.

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Chesnaye, N., Bonthuis, M., Schaefer, F. et al. Demographics of paediatric renal replacement therapy in Europe: a report of the ESPN/ERA–EDTA registry. Pediatr Nephrol 29, 2403–2410 (2014). https://doi.org/10.1007/s00467-014-2884-6

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  • DOI: https://doi.org/10.1007/s00467-014-2884-6

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