espn/era-edta registry
DESCRIPTION
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. - PowerPoint PPT PresentationTRANSCRIPT
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 2006
• 2nd 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 - 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
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