Vasculitis & polymyalgia rheumatica
Data quality and patient characteristics in European ANCA-associated vasculitis registries: data retrieval by federated querying
Authors' conclusion
In the largest reported AAV cohort-study, we federated patient registries using semantic web technologies and highlighted concerns about data quality. The comparison of patient characteristics, treatment and outcomes was hampered by heterogeneous recruitment settings.
Study context
- Population
- Patients with antibody-associated vasculitis (AAV) across six federated European registriescases of AAV
- Participants
- 5,282 patients
- Outcome
- Data quality, characteristics, treatment and outcomes
Methodological detailssix federated AAV registries, semantic interoperability via FAIRVASC ontology, SPARQL federated querying, random effects meta-analysis
- Six federated AAV registries
- Semantic interoperability via FAIRVASC ontology
- SPARQL federated querying
- Random effects meta-analysis
Main finding
As reported in the abstract
- Uniqueness and data-type consistency
- 100%
- Completeness
- 49%-100%
- Correctness
- 60%-100%
- Granulomatosis with polyangiitis (GPA)
- 2754 (52.1%)
- MPA
- 1580 (29.9%)
- EGPA
- 937 (17.7%)
- Lung involvement
- 3281 (65.1%)
- Ear-nose-throat involvement
- 2860 (56.7%)
- Kidney involvement
- 2534 (50.2%)
- IV CYC remission induction
- 982 (50.7%)
- RTX remission induction
- 505 (17.7%)
- Pulsed IV GC use (highly variable)
- 11%-91%
- Overall mortality per 1000 patient-years
- 28.8 (95% CI 19.7 to 42.2)
- End-stage kidney disease incidence per 1000 patient-years
- 24.8 (95% CI 19.7 to 31.1)
Observational data: associations, not effects.
Original publication
Data quality and patient characteristics in European ANCA-associated vasculitis registries: data retrieval by federated querying. Ann Rheum Dis. Published 2 January 2024. doi:10.
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