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

Arthritis Research & Therapy

Research

Gary J. Macfarlane¹  Maureen Heddle¹  Catalin Codreanu²  Bente Glintborg³  Tore K. Kvien⁴  Eirik K. Kristianslund⁴  Lotta Ljung⁵  Daniela Di Giuseppe⁵  Lykke M. Ørnbjerg⁶  Merete L. Hetland⁶  Louise Linde⁶  Mikkel Østergaard⁶  Simon H. Rasmussen⁶  Pasoon Hellamand⁷  Jakub Závada⁸  Jiří Vencovský⁸  Anne Gitte Loft⁹  Karin Laas^1,10  Michael J. Nissen^1,11  Maria J. Santos^1,12  Isabel Castrejon^1,13  Adrian Ciurea^1,14  Ziga Rotar^1,15  Matija Tomšič^1,15  Dan Nordstrom^1,16  Tuulikki Sokka-Isler^1,17  Bjorn Gudbjornsson^1,18  Gerdur Gröndal^1,18  Thorvardur Jon Love^1,18  Roberta Ramonda^1,19  Florenzo Iannone^2,20  Ana M. Rodrigues^2,21  Federico Díaz-Gonzáles^2,22 

[1] Aberdeen Centre for Arthritis and Musculoskeletal Health (Epidemiology Group), 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 (REMEDY), Diakonhjemmet Hospital, Oslo, Norway;Clinical Epidemiology Division, Department of Medicine Solna, Karolinska Institutet, Stockholm, Sweden;Copenhagen Center for Arthritis Research (COPECARE), 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 (DIMED), 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;

关键词: Spondyloarthritis;    European registries;    Clinical data collection;    Collaborative research;    Real-world evidence;   

DOI  :  10.1186/s13075-023-03184-7

 received in 2023-06-23, accepted in 2023-10-07,  发布年份 2023

来源: Springer

【 摘 要 】

BackgroundIn 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).MethodsData 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.ResultsFifteen 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.ConclusionImportant 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.

【 授权许可】

CC BY   
© BioMed Central Ltd., part of Springer Nature 2023

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