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ESPN/ERA-EDTA registry

ESPN/ERA-EDTA registry. Status. Karlijn van Stralen Enrico Verrina, Jane Tizard, Kitty Jager. Outline. 1st part – registry – Karlijn van Stralen Aims Database Data from 2006 2nd part – results – Jane Tizard Variation within Europe Possibilities for extended research. Aim.

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ESPN/ERA-EDTA registry

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

  2. Outline • 1st part – registry – Karlijn van Stralen • Aims • Database • Data from 2006 • 2nd part – results – Jane Tizard • Variation within Europe • Possibilities for extended research

  3. Aim To improve the outcome of children with ESRD throughout Europe

  4. 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

  5. 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

  6. 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

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

  8. 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

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

  10. Database - Access

  11. Database – Excel

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

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

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

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

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

  17. 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

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