Recording of non-musculoskeletal manifestations, comorbidities and safety outcomes in European spondyloarthritis registries : A survey
(2024) In Rheumatology Advances in Practice 8(4).- Abstract
Objectives: Real-world evidence is needed to inform treatment strategies for patients with PsA and axial SpA (axSpA) who have non-musculoskeletal manifestations (NMMs), various risk factors and comorbidities. International collaboration is required to ensure statistical power and to enhance generalizability. The first step forward is identifying which data are currently being collected. Across 17 registries participating in the European Spondyloarthritis Research Collaboration (EuroSpA), we aimed to map recording practices for NMMs, comorbidities and safety outcomes in patients with PsA and axSpA. Methods: Through a survey with 4,420 questionnaire items, we explored the recording practices of 58 pre-defined conditions (i.e. NMMs,... (More)
Objectives: Real-world evidence is needed to inform treatment strategies for patients with PsA and axial SpA (axSpA) who have non-musculoskeletal manifestations (NMMs), various risk factors and comorbidities. International collaboration is required to ensure statistical power and to enhance generalizability. The first step forward is identifying which data are currently being collected. Across 17 registries participating in the European Spondyloarthritis Research Collaboration (EuroSpA), we aimed to map recording practices for NMMs, comorbidities and safety outcomes in patients with PsA and axSpA. Methods: Through a survey with 4,420 questionnaire items, we explored the recording practices of 58 pre-defined conditions (i.e. NMMs, comorbidities and safety outcomes) covering 10 disease areas. In all registries we mapped for each condition whether it was recorded, the recording procedure and the potential to identify it through linkage to other national registries. Results: Conditions were generally recorded at entry into the registry and clinical follow-up visits using a pre-specified list or a coding system. Most registries recorded conditions within the following disease areas: NMMs (number of registries, n = 15-16), cardiovascular diseases (n = 10-14), gastrointestinal diseases (n = 12-13), infections (n = 10-13) and death (n = 14). Nordic countries had the potential for data linkage and generally had limited recording of conditions in their registry, while other countries had comprehensive recording practices. Conclusion: A wide range of conditions were consistently recorded across the registries. The recording practices of many conditions and disease areas were comparable across the registries. Our findings support the potential for future collaborative research.
(Less)
- author
- organization
- publishing date
- 2024
- type
- Contribution to journal
- publication status
- published
- subject
- keywords
- biological therapies, comorbidity, DMARDs, JAK inhibitors, multimorbidity, routinely collected data, spondyloarthritis
- in
- Rheumatology Advances in Practice
- volume
- 8
- issue
- 4
- article number
- rkae135
- publisher
- Oxford University Press
- external identifiers
-
- pmid:39611201
- scopus:85210915042
- ISSN
- 2514-1775
- DOI
- 10.1093/rap/rkae135
- language
- English
- LU publication?
- yes
- id
- 01414333-46bd-4b79-bea3-4c43e7d83014
- date added to LUP
- 2025-01-28 11:27:10
- date last changed
- 2025-07-02 00:07:19
@article{01414333-46bd-4b79-bea3-4c43e7d83014,
abstract = {{<p>Objectives: Real-world evidence is needed to inform treatment strategies for patients with PsA and axial SpA (axSpA) who have non-musculoskeletal manifestations (NMMs), various risk factors and comorbidities. International collaboration is required to ensure statistical power and to enhance generalizability. The first step forward is identifying which data are currently being collected. Across 17 registries participating in the European Spondyloarthritis Research Collaboration (EuroSpA), we aimed to map recording practices for NMMs, comorbidities and safety outcomes in patients with PsA and axSpA. Methods: Through a survey with 4,420 questionnaire items, we explored the recording practices of 58 pre-defined conditions (i.e. NMMs, comorbidities and safety outcomes) covering 10 disease areas. In all registries we mapped for each condition whether it was recorded, the recording procedure and the potential to identify it through linkage to other national registries. Results: Conditions were generally recorded at entry into the registry and clinical follow-up visits using a pre-specified list or a coding system. Most registries recorded conditions within the following disease areas: NMMs (number of registries, n = 15-16), cardiovascular diseases (n = 10-14), gastrointestinal diseases (n = 12-13), infections (n = 10-13) and death (n = 14). Nordic countries had the potential for data linkage and generally had limited recording of conditions in their registry, while other countries had comprehensive recording practices. Conclusion: A wide range of conditions were consistently recorded across the registries. The recording practices of many conditions and disease areas were comparable across the registries. Our findings support the potential for future collaborative research.</p>}},
author = {{Ahmadzay, Zohra F. and Heberg, Jette and Jørgensen, Jacob B. and Ørnbjerg, Lykke M. and Østergaard, Mikkel and Møller-Bisgaard, Signe and Michelsen, Brigitte and Loft, Anne Gitte and Jones, Gareth T. and Hellamand, Pasoon and Scherer, Almut and Nissen, Michael J. and Pavelka, Karel and Závada, Jakub and Laas, Karin and Vorobjov, Sigrid and Nordström, Dan and Sokka-Isler, Tuulikki and Regierer, Anne C. and Reich, Andreas and Gudbjornsson, Bjorn and Thorarinsdottir, Katrin and Iannone, Florenzo and Favalli, Ennio Giulio and Van De Sande, Marleen and Provan, Sella Aarrestad and Kvien, Tore K. and Rodrigues, Ana Maria and Gonçalves, Cátia F. and Codreanu, Catalin and Mogosan, Corina and Rotar, Ziga and Prikmajer, Katja Perdan and Castrejon, Isabel and Otero-Varela, Lucía and Di Giuseppe, Daniela and Wallman, Johan K. and Ciurea, Adrian and Möller, Burkhard and Kenar-Artln, Gökçe and Ylldlrlm, Tuba Demirci and MacFarlane, Gary J. and Rotariu, Ovidiu and Glintborg, Bente and Hetland, Merete Lund}},
issn = {{2514-1775}},
keywords = {{biological therapies; comorbidity; DMARDs; JAK inhibitors; multimorbidity; routinely collected data; spondyloarthritis}},
language = {{eng}},
number = {{4}},
publisher = {{Oxford University Press}},
series = {{Rheumatology Advances in Practice}},
title = {{Recording of non-musculoskeletal manifestations, comorbidities and safety outcomes in European spondyloarthritis registries : A survey}},
url = {{http://dx.doi.org/10.1093/rap/rkae135}},
doi = {{10.1093/rap/rkae135}},
volume = {{8}},
year = {{2024}},
}