ArticleArthritis research & therapy2023
Commonalities and differences in set-up and data collection across European spondyloarthritis registries - results from the EuroSpA collaboration.
Article in Arthritis research & therapy, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 11 papers.
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Who cites it
11 citing papers in PubMed, 20 citations in OpenAlex.
- Article
- The impact of smoking and obesity on secukinumab effectiveness in psoriatic arthritis: real-world evidence from 1202 European patients.EULAR rheumatology open · 2026Article
- Observational
- Discrepancies between routine sacroiliac joint MRI reporting and current expert recommendations in patients with spondyloarthritis.RMD open · 2025Article
- Differential joint-level response to secukinumab in psoriatic arthritis: A collaborative European observational cohort study.EULAR rheumatology open · 2025Article
- Article
- Associations between comorbidities and patient-reported outcomes in axial spondyloarthritis: data from a single-center real-world cohort.Clinical rheumatology · 2025Article
- Article
- Differences in the response to TNF inhibitors at distinct joint locations in patients with psoriatic arthritis: results from nine European registries.Arthritis research & therapy · 2025Observational
- Article
- Recording of non-musculoskeletal manifestations, comorbidities and safety outcomes in European spondyloarthritis registries: a survey.Rheumatology advances in practice · 2024Article
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Authors and funding
33 authors at 20 institutions in 13 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundIn European axial spondyloarthritis (axSpA) and psoriatic arthritis (PsA) clinical registries, we aimed to investigate commonalities and differences in (1) set-up, clinical data collection; (2) data availability and completeness; and (3) wording, recall period, and scale used for selected patient-reported outcome measures (PROMs).
methodsData was obtained as part of the EuroSpA Research Collaboration Network and consisted of (1) an online survey and follow-up interview, (2) upload of real-world data, and (3) selected PROMs included in the online survey.
resultsFifteen registries participated, contributing 33,948 patients (axSpA: 21,330 (63%), PsA: 12,618 (37%)). The reported coverage of eligible patients ranged from 0.5 to 100%. Information on age, sex, biological/targeted synthetic disease-modifying anti-rheumatic drug treatment, disease duration, and C-reactive protein was available in all registries with data completeness between 85% and 100%. All PROMs (Bath Ankylosing Spondylitis Disease Activity and Functional Indices, Health Assessment Questionnaire, and patient global, pain and fatigue assessments) were more complete after 2015 (68-86%) compared to prior (50-79%). Patient global, pain and fatigue assessments showed heterogeneity between registries in terms of wording, recall periods, and scale.
conclusionImportant 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. This study might serve as a basis for examining how differences in data collection across registries may impact the results of collaborative research in the future.
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