Progress with the European Society for Paediatric Nephrology (ESPN)/ERA-EDTA Registry for children with established renal failure (ERF)
Established renal failure (ERF) in children and young adults is considered a rare disease. Single country data may be underpowered to show any differences or effects of treatment and therefore cooperation between countries is essential to improve the outcome of children with ERF. Until 2007 data collection on children and young adults on renal replacement therapy (RRT) in Europe was limited to that of the European Renal Association–European Dialysis and Transplant (ERA–EDTA) Registry. Within the ERA–EDTA Registry data are collected from national and regional renal registries. As these do not always include paediatric patients, data on children have only been available from a limited part of Europe. The first publication on paediatric patients by the Amsterdam-based ERA–EDTA Registry included data on 3184 patients (aged 0–19 years) from 12 registries in 11 countries, covering a total general population of 80.3 million, who started RRT between 1980 and 2000 . Information was presented on incidence, prevalence, primary renal disease, age at onset of RRT, type of treatment and survival. The data demonstrated an almost 3-fold increase in the prevalence of ERF over 20 years, from 22.9 per million age related population (pmarp) in 1980 to 62.1 pmarp in 2000. The incidence rose from 7.1 pmarp in the 1980–84 cohorts to 9.9 pmarp in the 1985–89 cohorts but then remained stable. In the early cohort haemodialysis was the most common form of first treatment modality, but by 1995–2000 peritoneal dialysis and pre-emptive transplant were increasingly used. Over the 20 years studied the relative risk of death for patients starting dialysis or following their first transplant reduced by 36% and 42%, respectively.
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