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
![Page 1: ESPN/ERA-EDTA registry](https://reader035.vdocument.in/reader035/viewer/2022070409/5681449a550346895db1458d/html5/thumbnails/1.jpg)
ESPN/ERA-EDTA registry
Karlijn van Stralen
Enrico Verrina, Jane Tizard, Kitty Jager
Status
![Page 2: ESPN/ERA-EDTA registry](https://reader035.vdocument.in/reader035/viewer/2022070409/5681449a550346895db1458d/html5/thumbnails/2.jpg)
Outline
• 1st part – registry – Karlijn van Stralen– Aims– Database– Data from 2006
• 2nd part – results – Jane Tizard– Variation within Europe– Possibilities for extended research
![Page 3: ESPN/ERA-EDTA registry](https://reader035.vdocument.in/reader035/viewer/2022070409/5681449a550346895db1458d/html5/thumbnails/3.jpg)
Aim
To improve the outcome of children with ESRD throughout Europe
![Page 4: ESPN/ERA-EDTA registry](https://reader035.vdocument.in/reader035/viewer/2022070409/5681449a550346895db1458d/html5/thumbnails/4.jpg)
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
![Page 5: ESPN/ERA-EDTA registry](https://reader035.vdocument.in/reader035/viewer/2022070409/5681449a550346895db1458d/html5/thumbnails/5.jpg)
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
![Page 6: ESPN/ERA-EDTA registry](https://reader035.vdocument.in/reader035/viewer/2022070409/5681449a550346895db1458d/html5/thumbnails/6.jpg)
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
![Page 7: ESPN/ERA-EDTA registry](https://reader035.vdocument.in/reader035/viewer/2022070409/5681449a550346895db1458d/html5/thumbnails/7.jpg)
Data collection
• Individual patient data
• Standardisation of variables through NephroQUEST project
• Specification for paediatric population
![Page 8: ESPN/ERA-EDTA registry](https://reader035.vdocument.in/reader035/viewer/2022070409/5681449a550346895db1458d/html5/thumbnails/8.jpg)
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
![Page 9: ESPN/ERA-EDTA registry](https://reader035.vdocument.in/reader035/viewer/2022070409/5681449a550346895db1458d/html5/thumbnails/9.jpg)
Database
• Facilitate datacollection
• Access version– Easy for individual patient collection – Less sensitive to errors
• Excel version– Easy for merging large datasets– Sensitive to errors
![Page 10: ESPN/ERA-EDTA registry](https://reader035.vdocument.in/reader035/viewer/2022070409/5681449a550346895db1458d/html5/thumbnails/10.jpg)
Database - Access
![Page 11: ESPN/ERA-EDTA registry](https://reader035.vdocument.in/reader035/viewer/2022070409/5681449a550346895db1458d/html5/thumbnails/11.jpg)
![Page 12: ESPN/ERA-EDTA registry](https://reader035.vdocument.in/reader035/viewer/2022070409/5681449a550346895db1458d/html5/thumbnails/12.jpg)
Database – Excel
![Page 13: ESPN/ERA-EDTA registry](https://reader035.vdocument.in/reader035/viewer/2022070409/5681449a550346895db1458d/html5/thumbnails/13.jpg)
Where do we stand?
• Sent out database format to many countries
• Received many datasets
• Merged all datasets
• Analysed first results
![Page 14: ESPN/ERA-EDTA registry](https://reader035.vdocument.in/reader035/viewer/2022070409/5681449a550346895db1458d/html5/thumbnails/14.jpg)
Participating countries
Extended data collection
Only collection of essential data
Essential data via ERA-EDTA
Intention for data collection
![Page 15: ESPN/ERA-EDTA registry](https://reader035.vdocument.in/reader035/viewer/2022070409/5681449a550346895db1458d/html5/thumbnails/15.jpg)
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
![Page 16: ESPN/ERA-EDTA registry](https://reader035.vdocument.in/reader035/viewer/2022070409/5681449a550346895db1458d/html5/thumbnails/16.jpg)
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
![Page 17: ESPN/ERA-EDTA registry](https://reader035.vdocument.in/reader035/viewer/2022070409/5681449a550346895db1458d/html5/thumbnails/17.jpg)
Prevalence of RRT in children <15 years (pmarp)
Range
5 – 89 pmarp
High
> 30 pmarp
Medium
20 – 30 pmarp
Low
< 20 pmarp
![Page 18: ESPN/ERA-EDTA registry](https://reader035.vdocument.in/reader035/viewer/2022070409/5681449a550346895db1458d/html5/thumbnails/18.jpg)
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
![Page 19: ESPN/ERA-EDTA registry](https://reader035.vdocument.in/reader035/viewer/2022070409/5681449a550346895db1458d/html5/thumbnails/19.jpg)