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