Lessons learned from the ESPN/ERA-EDTA Registry.
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.
Department of Pediatrics, Bordeaux University Hospital, Bordeaux, France. jerome.harambat@chu-bordeaux.fr.
Jérôme
J
Harambat
ESPN/ERA-EDTA Registry, Department of Medical Informatics, Academic Medical Center, Amsterdam, Netherlands.
Marjolein
M
Bonthuis
Department of Pediatric Nephrology, Emma Children's Hospital, Academic Medical Center, Amsterdam, Netherlands.
Jaap W
JW
Groothoff
Department of Pediatric Nephrology, University Children's Hospital, Heidelberg, Germany.
Franz
F
Schaefer
Department of Pediatric Nephrology, Bristol Royal Hospital for Children, Bristol, UK.
E Jane
EJ
Tizard
Dialysis Unit, Gaslini Children's Hospital, Genoa, Italy.
Enrico
E
Verrina
ESPN/ERA-EDTA Registry, Department of Medical Informatics, Academic Medical Center, Amsterdam, Netherlands.
Karlijn J
KJ
van Stralen
ESPN/ERA-EDTA Registry, Department of Medical Informatics, Academic Medical Center, Amsterdam, Netherlands.
Kitty J
KJ
Jager
D000740:Anemia / Q000453:epidemiology / Q000209:etiology; D002318:Cardiovascular Diseases / Q000453:epidemiology / Q000209:etiology; D002648:Child; D005060:Europe / Q000453:epidemiology; D006801:Humans; D015994:Incidence; D007676:Kidney Failure, Chronic / Q000150:complications / Q000453:epidemiology* / Q000628:therapy; D016030:Kidney Transplantation / Q000379:methods / Q000706:statistics & numerical data*; D015995:Prevalence; D035583:Rare Diseases / Q000453:epidemiology* / Q000628:therapy; D012042:Registries; D006435:Renal Dialysis / Q000379:methods / Q000706:statistics & numerical data*; D012307:Risk Factors; D016896:Treatment Outcome
Comorbidities; ESPN/ERA–EDTA registry; End-stage renal disease; Outcome; Pediatric patients; Renal replacement therapy