ESPN/ERA-EDTA registry Karlijn van Stralen Enrico Verrina, Jane Tizard, Kitty Jager Status

Outline 1st part – registry – Karlijn van Stralen –Aims –Database –Data from nd part – results – Jane Tizard –Variation within Europe –Possibilities for extended research

Aim To improve the outcome of children with ESRD throughout Europe

ESPN / ERA-EDTA registry ESRD is a rare disease Few patients per country Cooperation needed to study –Subgroup analyses –Rare PRDs –Survival Study differences between countries Research –Establish research networks –Generate hypotheses for more specific analyses –Initiate multi-centre studies

ERA-EDTA registry Collection of data via ERA-EDTA registry High quality data However –No detailed information –Few countries collecting paediatric data –No inclusion of separate paediatric registries

ESPN / ERA-EDTA registry Collaboration of the ESPN with ERA-EDTA registry Information from –ERA-EDTA countries with paediatric data –Separate paediatric registries –New (paediatric) registries Strongly endorse collaboration with adult registries

Data collection Individual patient data Standardisation of variables through NephroQUEST project Specification for paediatric population

Data collection - differentiation Essential –E.g. Patient identifier, Date of Birth, Start of RRT, Treatment type, changes in treatment Extended A –E.g. GFR, weight, height, type of transplant, comorbidities, blood pressure Extended B –E.g. First visit nephrologist, medication use, peritonitis

Database Facilitate datacollection Access version –Easy for individual patient collection –Less sensitive to errors Excel version –Easy for merging large datasets –Sensitive to errors

Database - Access

Database – Excel

Where do we stand? Sent out database format to many countries Received many datasets Merged all datasets Analysed first results

Participating countries Extended data collection Only collection of essential data Essential data via ERA-EDTA Intention for data collection

Data Population covered –446,609,104 general population – 82,101,803 children aged 0-15 New patients in 2006 –451 Total patients in 2006 –2386

Incidence of RRT in children <15 years (pmarp) Range 0 – 15.2 pmarp High > 6 pmarp Medium 5.0 – 6.0 pmarp Low < 5 pmarp

Prevalence of RRT in children <15 years (pmarp) Range 5 – 89 pmarp High > 30 pmarp Medium 20 – 30 pmarp Low < 20 pmarp

Causes of differences Small numbers/random variation Registry –No pre-emptive transplantation patients –Low coverage – but has been checked Cause of renal disease –E.g. Finnish type nephropathy Differences in health care –Catch – up of patients –Differences in health systems