Recording of non-musculoskeletal manifestations, comorbidities, and safety outcomes in European spondyloarthritis registries: a survey

• Published in: Rheumatology advances in practice
• Main Authors: Ahmadzay, Zohra F, Heberg, Jette, Jørgensen, Jacob B, Ørnbjerg, Lykke M, Østergaard, Mikkel, Møller-Bisgaard, Signe, Michelsen, Brigitte, Loft, Anne Gitte, Jones, Gareth T, Hellamand, Pasoon, Scherer, Almut, Nissen, Michael J, Pavelka, Karel, Závada, Jakub, Laas, Karin, Vorobjov, Sigrid, Nordström, Dan, Sokka-Isler, Tuulikki, Regierer, Anne C, Reich, Andreas, Gudbjornsson, Bjorn, Thorarinsdottir, Katrin, Iannone, Florenzo, Favalli, Ennio Giulio, van de Sande, Marleen, Provan, Sella Aarrestad, Kvien, Tore K, Rodrigues, Ana Maria, Gonçalves, Cátia F, Codreanu, Catalin, Mogosan, Corina, Rotar, Ziga, Prikmajer, Katja Perdan, Castrejon, Isabel, Otero-Varela, Lucía, Di Giuseppe, Daniela, Wallman, Johan K, Ciurea, Adrian, Möller, Burkhard, Kenar-Artın, Gökçe, Yildirim, Tuba Demirci, Macfarlane, Gary J, Rotariu, Ovidiu, Glintborg, Bente, Hetland, Merete Lund
• Format: Journal Article
• Language: English
• Published: 05.11.2024
• ISSN: 2514-1775; 2514-1775
• DOI: 10.1093/rap/rkae135

Abstract Objectives Real-world evidence is needed to inform treatment strategies for patients with psoriatic arthritis (PsA) and axial spondyloarthritis (axSpA), who have non-musculoskeletal manifestations (NMM), various risk factors, and comorbidities. International collaboration is required to ensure statistical power and to enhance generalisability. The first step forward is identifying which data are currently being collected. Across 17 registries participating in the European Spondyloarthritis research collaboration, we aimed to map in a survey 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 (ie, NMMs, comorbidities, and safety outcomes) covering 10 disease areas. In all registries we mapped for each condition 1) whether it was recorded, 2) the recording procedure, and 3) 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.