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Recording of non-musculoskeletal manifestations, comorbidities and safety outcomes in European spondyloarthritis registries: a survey
ZF. Ahmadzay, J. Heberg, JB. Jørgensen, LM. Ørnbjerg, M. Østergaard, S. Møller-Bisgaard, B. Michelsen, AG. Loft, GT. Jones, P. Hellamand, A. Scherer, MJ. Nissen, K. Pavelka, J. Závada, K. Laas, S. Vorobjov, D. Nordström, T. Sokka-Isler, AC....
Status neindexováno Jazyk angličtina Země Anglie, Velká Británie
Typ dokumentu časopisecké články
NLK
Directory of Open Access Journals
od 2017
PubMed Central
od 2017
Europe PubMed Central
od 2017
Oxford Journals Open Access Collection
od 2017
ROAD: Directory of Open Access Scholarly Resources
od 2017
PubMed
39611201
DOI
10.1093/rap/rkae135
Knihovny.cz E-zdroje
- Publikační typ
- časopisecké články MeSH
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
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 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 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 Hospital dos Lusíadas Lisbon Portugal
Swiss Clinical Quality Management Foundation Statistics Group Zurich Switzerland
University of Eastern Finland and Hospital Nova Jyväskylä Jyväskylä Finland
Citace poskytuje Crossref.org
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