Spondyloarthritis & psoriatic arthritis
Commonalities and differences in set-up and data collection across European spondyloarthritis registries — results from the EuroSpA collaboration
Authors' conclusion
Important heterogeneity in registry design and data collection across fifteen European axSpA and PsA registries was observed. Several core measures were widely available, and an increase in data completeness of PROMs in recent years was identified.
Study context
- Population
- European axial spondyloarthritis (axSpA) and psoriatic arthritis (PsA) clinical registries in the EuroSpA Research Collaboration Network
- Participants
- 33,948 participants15 registries
- Exposure
- axSpA vs PsA
- axSpAn = 21,330
- PsAn = 12,618
- Outcome
- Commonalities and differences in set-up, clinical data collection, data availability and completeness, and wording, recall period and scale of selected PROMs
Methodological detailsonline survey and follow-up interview, upload of real-world data, multinational registry collaboration (EuroSpA)
- Online survey and follow-up interview
- Upload of real-world data
- Multinational registry collaboration (EuroSpA)
Main finding
As reported in the abstract
Reported coverage of eligible patients
0.5 to 100%
Data completeness for age, sex, b/tsDMARD treatment, disease duration and CRP (available in all registries)
between 85% and 100%
Completeness of all patient-reported outcome measures (PROMs) (BASDAI, BASFI, HAQ, patient global, pain and fatigue) after 2015
68-86%
Completeness of all PROMs before 2015
50-79%
Observational data: associations, not effects.
Original publication
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