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.

Aberdeen Centre for Arthritis and Musculoskeletal Health University of Aberdeen Aberdeen UK

Amsterdam Rheumatology Immunology Center Amsterdam UMC Amsterdam The Netherlands

Center for Rheumatic Diseases University of Medicine and Pharmacy Bucharest Romania

Center for Treatment of Rheumatic and Musculoskeletal Diseases Diakonhjemmet Hospital Oslo Norway

Centre for Rheumatology Research Landspitali University Hospital Reykjavik Iceland

Clinical Epidemiology Division Department of Medicine Solna Karolinska Institutet Stockholm Sweden

Copenhagen Center for Arthritis Research Center for Rheumatology and Spine Diseases Rigshospitalet Glostrup Denmark

DANBIO and Copenhagen Center for Arthritis Research Center for Rheumatology and Spine Diseases Rigshospitalet Glostrup Denmark

Department of Clinical Medicine Aarhus University Aarhus Denmark

Department of Clinical Medicine University of Copenhagen Copenhagen Denmark

Department of Clinical Sciences and Community Health University of Milan Milan Italy

Department of Clinical Sciences Lund Rheumatology Skåne University Hospital Lund University Lund Sweden

Department of Internal Medicine Division of Rheumatology Dokuz Eylul School of Medicine Izmir Turkey

Department of Rheumatology 1st Faculty of Medicine Charles University Prague Czech Republic

Department of Rheumatology Aarhus University Hospital Aarhus Denmark

Department of Rheumatology and Clinical Immunology Amsterdam University Medical Centers Amsterdam The Netherlands

Department of Rheumatology and Clinical Immunology and Department of Experimental Immunology Amsterdam Institute for Infection and Immunity Amsterdam The Netherlands

Department of Rheumatology and Medical Sciences ASST Gaetanoi Pini CTO Milan Italy

Department of Rheumatology East Tallinn Central Hospital Tallinn Estonia

Department of Rheumatology Geneva University Hospital Geneva Switzerland

Department of Rheumatology Hospital General Universitario Gregorio Marañón Madrid Spain

Department of Rheumatology Slagelse Hospital Slagelse Denmark

Department of Rheumatology University Hospital Zurich University of Zurich Zurich Switzerland

Department of Rheumatology University Medical Centre Ljubljana Ljubljana Slovenia

Department Rheumatology and Immunology Inselspital University Hospital Bern Switzerland

Departments of Medicine and Rheumatology Helsinki University Hospital Helsinki Finland

Deutsches Rheuma Forschungszentrum Berlin Epidemiologie Berlin Germany

Faculty of Medicine Complutense University of Madrid Madrid Spain

Faculty of Medicine University of Iceland Reykjavik Iceland

Faculty of Medicine University of Ljubljana Ljubljana Slovenia

Institute of Rheumatology Prague Czech Republic

National Institute for Health Development Tallinn Estonia

Nova Medical School EpiDoC unit CEDOC Lisbon Portugal

Public Health Section Inland Norway University of Applied Sciences Elverum Norway

Research Unit Sørlandet Hospital Kristiansand Norway

Research Unit Spanish Society of Rheumatology Madrid Spain

Reuma pt Sociedade Portuguesa de Reumatologia Lisbon Portugal

Rheumatology Unit Dipartimento di Medicina di Precisione e Rigenerativa e Area Jonica University of Bari Bari Italy

Rheumatology Unit Hospital dos Lusíadas Lisbon Portugal

Swiss Clinical Quality Management Foundation Statistics Group Zurich Switzerland

University of Eastern Finland and Hospital Nova Jyväskylä Jyväskylä Finland

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