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Commonalities and differences in set-up and data collection across European spondyloarthritis registries - results from the EuroSpA collaboration

L. Linde, LM. Ørnbjerg, SH. Rasmussen, TJ. Love, AG. Loft, J. Závada, J. Vencovský, K. Laas, D. Nordstrom, T. Sokka-Isler, B. Gudbjornsson, G. Gröndal, F. Iannone, R. Ramonda, P. Hellamand, EK. Kristianslund, TK. Kvien, AM. Rodrigues, MJ. Santos,...

. 2023 ; 25 (1) : 205. [pub] 20231019

Jazyk angličtina Země Anglie, Velká Británie

Typ dokumentu časopisecké články

Perzistentní odkaz   https://www.medvik.cz/link/bmc24001016

BACKGROUND: In 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). METHODS: Data 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. RESULTS: Fifteen 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. 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. 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.

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

Center for Rheumatic Diseases University of Medicine and Pharmacy Bucharest Romania

Center for Rheumatology and Spine Diseases DANBIO Registry Rigshospitalet Glostrup Denmark

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

Clinical Epidemiology Division Department of Medicine Solna Karolinska Institutet Stockholm Sweden

Copenhagen Center for Arthritis Research Rigshospitalet Glostrup Denmark

Department of Clinical Immunology and Rheumatology Amsterdam Medical Center Amsterdam Netherlands

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

Department of Rheumatology Aarhus University Hospital Aarhus Denmark

Department of Rheumatology East Tallinn Central Hospital Tallinn Estonia

Department of Rheumatology Geneva University Hospital Geneva Switzerland

Department of Rheumatology Hospital Garcia de Orta Almada Lisbon Portugal

Department of Rheumatology Hospital General Universitario Gregorio Marañón Madrid Spain

Department of Rheumatology University Hospital Zurich University of Zurich Zurich Switzerland

Department of Rheumatology University Medical Centre Ljubljana Ljubljana Slovenia

Departments of Medicine and Rheumatology Helsinki University Hospital Helsinki Finland

Faculty of Health Sciences University of Eastern Finland Jyvaskyla Finland

Faculty of Medicine University of Iceland Reykjavik Iceland

Rheumatology Unit Department of Medicine University of Padova Padova Italy

Rheumatology Unit University of Bari Bari Italy

Sociedade Portuguesa de Reumatologia Reuma pt Lisbon Portugal

Universidad de La Laguna and Rheumatology Service La Laguna Spain

Citace poskytuje Crossref.org

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