{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,2]],"date-time":"2026-09-02T00:42:32Z","timestamp":1788309752416,"version":"build-2803163510"},"reference-count":44,"publisher":"Springer Science and Business Media LLC","issue":"1","license":[{"start":{"date-parts":[[2023,10,19]],"date-time":"2023-10-19T00:00:00Z","timestamp":1697673600000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2023,10,19]],"date-time":"2023-10-19T00:00:00Z","timestamp":1697673600000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"funder":[{"name":"Novartis Pharma AG"},{"name":"Royal Library, Copenhagen University Library"}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Arthritis Res Ther"],"abstract":"<jats:title>Abstract<\/jats:title><jats:sec>\n                <jats:title>Background<\/jats:title>\n                <jats:p>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).<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Methods<\/jats:title>\n                <jats:p>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.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Results<\/jats:title>\n                <jats:p>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\u201386%) compared to prior (50\u201379%). Patient global, pain and fatigue assessments showed heterogeneity between registries in terms of wording, recall periods, and scale.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Conclusion<\/jats:title>\n                <jats:p>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.<\/jats:p>\n              <\/jats:sec>","DOI":"10.1186\/s13075-023-03184-7","type":"journal-article","created":{"date-parts":[[2023,10,19]],"date-time":"2023-10-19T06:01:53Z","timestamp":1697695313000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":23,"title":["Commonalities and differences in set-up and data collection across European spondyloarthritis registries \u2014 results from the EuroSpA collaboration"],"prefix":"10.1186","volume":"25","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-0863-1352","authenticated-orcid":false,"given":"Louise","family":"Linde","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lykke 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J Eval Clin Pract. 2011;17(2):268\u201374.","journal-title":"J Eval Clin Pract"}],"container-title":["Arthritis Research &amp; Therapy"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1186\/s13075-023-03184-7.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/article\/10.1186\/s13075-023-03184-7\/fulltext.html","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1186\/s13075-023-03184-7.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,11,18]],"date-time":"2023-11-18T17:30:55Z","timestamp":1700328655000},"score":1,"resource":{"primary":{"URL":"https:\/\/arthritis-research.biomedcentral.com\/articles\/10.1186\/s13075-023-03184-7"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2023,10,19]]},"references-count":44,"journal-issue":{"issue":"1","published-online":{"date-parts":[[2023,12]]}},"alternative-id":["3184"],"URL":"https:\/\/doi.org\/10.1186\/s13075-023-03184-7","relation":{},"ISSN":["1478-6362"],"issn-type":[{"value":"1478-6362","type":"electronic"}],"subject":[],"published":{"date-parts":[[2023,10,19]]},"assertion":[{"value":"23 June 2023","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"7 October 2023","order":2,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"19 October 2023","order":3,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"All participating registries obtained the necessary approvals (including written informed patient consent if needed) in accordance with legal, compliance and regulatory requirements from national Data Protection Agencies and\/or Research Ethics Boards prior to the data transfer. The study was performed in accordance with the Declaration of Helsinki.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethics approval and consent to participate"}},{"value":"Not applicable.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent for publication"}},{"value":"Louise Linde, Lykke M. \u00d8rnbjerg and Simon H. Rasmussen: Research grants from Novartis; Thorvardur Jon Love: None; Anne Gitte Loft: Research Grant from Novartis, and speaking and\/or consulting fees from AbbVie, Janssen, Lilly, MSD, Novartis, Pfizer, Roche, and UCB; Jakub Zavada: Speaker and consulting fees from Abbvie, Elli-Lilly, Sandoz, Novartis, Egis, UCB; Ji\u0159\u00ed Vencovsk\u00fd: Consulting and\/or speaking fees from Abbvie, Biogen, Boehringer Ingelheim, Eli Lilly, Gilead, Merck Sharp and Dohme, Pfizer and UCB; Karin Laas: Consulting and\/or speaking fees from Amgen, Johnson and Johnson and Novartis; Dan C. Nordstrom: Consulting and\/or speaking fees from Abbvie, BMS, Lilly, MSD, Novartis, Pfizer, Roche and UCB; Tuulikki Sokka-Isler: non-financial support from DiaGraphIT, personal fees from Abbvie, BMS, Celgene, Medac, Merck, Novartis, Orion Pharma, Pfizer, Roche, Sandoz, UCB and Bohringer Ingelheim, grants from Amgen, outside the submitted work; Bjorn Gudbjornsson: Consulting and\/or Speaking fees from Novartis and Nordic-Pharma; Gerdur Gr\u00f6ndal: None, Florenzo Iannone: Consulting and\/or speaking from Abbvie, Amgen, AstraZeneca, BMS, Galapagos, Janssen, Lilly, MSD, Novartis, Pfizer, Roche, UCB; Roberta Ramonda:\u00a0 Consulting and\/or speaking fees from AbbVie, Eli Lilly, Janssens, Novartis, UCB and Pfizer; Pasoon Hellamand: Research grant from Novartis; Eirik K. Kristianslund: None; Tore K. Kvien: Fees for speaking and\/or consulting last 2 years from AbbVie, Amgen, Celltrion, Gilead, Gr\u00fcnenthal, Novartis, Pfizer, Sandoz, UCB and research funding to Diakonhjemmet Hospital from AbbVie, BMS, Galapagos, Novartis, Pfizer and UCB; Ana M. Rodrigues: Research grant from Novartis, Pfizer, Amgen, consulting and\/or speaking from Abbvie, Amgen; Maria J. Santos: Speaker fees from Abbvie, AstraZeneca, Lilly, Novartis and Pfizer; Catalin Codreanu: Speaker and consultancy fees from AbbVie, Amgen, Boehringer Ingelheim, Ewopharma, Lilly, Novartis, Pfizer; Ziga Rotar: Speaker or consultancy fees from Abbvie, Novartis, MSD, Medis, Biogen, Eli Lilly, Pfizer, Sanofi, Lek, Janssen; Matija Tom\u0161i\u010d: Consulting and\/or speaking fees from Abbvie, Amgen, Biogen, Eli Lilly, Janssen, Medis, MSD, Novartis, Pfizer, Sanofi, Sandoz-Lek; Isabel Castrejon: Speaker and\/or consultancy fees from BMS, Eli-Lilly, Galapagos, Gilead, Janssen, Novartis, MSD, Pfizer, GSK; Federico D\u00edaz-Gonz\u00e1les: None; Daniela Di Giuseppe: None; Lotta Ljung: No grants, consulting or speaking fees, but has, for Karolinska University Hospital and as register holder for the Swedish Rheumatology Register in the last years agreements with Abbvie, Amgen, Eli Lilly, Galapagos, Novartis, Pfizer, Sanofi, Sobi, UCB, Janssen, BMS, GSK, Otsuka; Michael J. Nissen: Consulting and\/or speaking fees from AbbVie, Eli Lilly, Janssens, Novartis and Pfizer; Adrian Ciurea: Consulting and\/or speaking fees from AbbVie, Eli Lilly, Merck Sharp & Dohme, Novartis, Pfizer; Gary J. Macfarlane: Research grant from GSK; Maureen Heddle: None; Bente Glintborg: Research grants from Pfizer, AbbVie, BMS, Sandoz; Mikkel \u00d8stergaard: Research grants from Abbvie, BMS, Merck, Celgene and Novartis, and speaker and\/or consultancy fees from Abbvie, BMS, Boehringer-Ingelheim, Celgene, Eli-Lilly, Hospira, Janssen, Merck, Novartis, Novo, Orion, Pfizer, Regeneron, Roche, Sandoz, Sanofi and UCB; Merete L. Hetland: Research grants from Abbvie, Biogen, BMS, Celltrion, Eli Lilly, Janssen Biologics B.V, Lundbeck Fonden, MSD, Medac, Pfizer, Roche, Samsung Biopies, Sandoz, Novartis","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}}],"article-number":"205"}}