Lessons learned from the ESPN/ERA–EDTA Registry

Jérôme Harambat, Marjolein Bonthuis, Jaap W. Groothoff, Franz Schaefer, E. Jane Tizard, Enrico Verrina, Karlijn J. van Stralen, Kitty J. Jager

Research output: Contribution to journalArticle

Abstract

End-stage renal disease (ESRD) in children is a medically challenging condition. Due to its rarity and special features, methodologically sound collaborative studies are required. In 2007, a new European registry of pediatric renal replacement therapy (RRT), the ESPN/ERA–EDTA Registry, was launched. In recent years, the Registry has provided comprehensive data on incidence, prevalence, patient characteristics, RRT modalities, and mortality in pediatric ESRD, along with relevant insights into cardiovascular risk, anemia, nutrition and growth, transplantation outcomes, and rare diseases. In this review, we describe the study design and structure underlying the ESPN/ERA–EDTA Registry, summarize the major research findings from more than 20 publications, and discuss current limitations and the future challenges to overcome.

Original languageEnglish
JournalPediatric Nephrology
DOIs
Publication statusAccepted/In press - Oct 24 2015

Keywords

  • Comorbidities
  • End-stage renal disease
  • ESPN/ERA–EDTA registry
  • Outcome
  • Pediatric patients
  • Renal replacement therapy

ASJC Scopus subject areas

  • Nephrology
  • Pediatrics, Perinatology, and Child Health

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  • Cite this

    Harambat, J., Bonthuis, M., Groothoff, J. W., Schaefer, F., Tizard, E. J., Verrina, E., van Stralen, K. J., & Jager, K. J. (Accepted/In press). Lessons learned from the ESPN/ERA–EDTA Registry. Pediatric Nephrology. https://doi.org/10.1007/s00467-015-3238-8