{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,5]],"date-time":"2026-05-05T20:48:20Z","timestamp":1778014100204,"version":"3.51.4"},"reference-count":35,"publisher":"Elsevier BV","issue":"10","license":[{"start":{"date-parts":[[2025,10,1]],"date-time":"2025-10-01T00:00:00Z","timestamp":1759276800000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/tdm\/userlicense\/1.0\/"},{"start":{"date-parts":[[2025,10,1]],"date-time":"2025-10-01T00:00:00Z","timestamp":1759276800000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/legal\/tdmrep-license"},{"start":{"date-parts":[[2025,7,6]],"date-time":"2025-07-06T00:00:00Z","timestamp":1751760000000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0\/"}],"funder":[{"DOI":"10.13039\/501100008741","name":"EULAR","doi-asserted-by":"publisher","award":["QoC 007"],"award-info":[{"award-number":["QoC 007"]}],"id":[{"id":"10.13039\/501100008741","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["ard.eular.org","elsevier.com","sciencedirect.com"],"crossmark-restriction":true},"short-container-title":["Annals of the Rheumatic Diseases"],"published-print":{"date-parts":[[2025,10]]},"DOI":"10.1016\/j.ard.2025.07.001","type":"journal-article","created":{"date-parts":[[2025,8,21]],"date-time":"2025-08-21T08:15:51Z","timestamp":1755764151000},"page":"1621-1631","update-policy":"https:\/\/doi.org\/10.1016\/elsevier_cm_policy","source":"Crossref","is-referenced-by-count":3,"title":["EULAR recommendations for a core dataset to support clinical care and translational and observational research in systemic lupus erythematosus"],"prefix":"10.1016","volume":"84","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-8915-7837","authenticated-orcid":false,"given":"Johanna","family":"Mucke","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5299-1406","authenticated-orcid":false,"given":"George","family":"Bertsias","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4471-8375","authenticated-orcid":false,"given":"Martin","family":"Aringer","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Laurent","family":"Arnaud","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-2506-687X","authenticated-orcid":false,"given":"Carina","family":"Bostr\u00f6m","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Ricard","family":"Cervera","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7309-2370","authenticated-orcid":false,"given":"Gamal","family":"Chehab","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"L\u00e1szl\u00f3","family":"Czirj\u00e1k","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Lene Wohlfahrt","family":"Dreyer","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3172-3570","authenticated-orcid":false,"given":"Lu\u00eds","family":"In\u00eas","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-5654-4993","authenticated-orcid":false,"given":"S\u00f8ren","family":"Jacobsen","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Charite Kjaerside","family":"Nielsen","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Emiliano","family":"Marasco","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Marta","family":"Mosca","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Kirsi","family":"Myllys","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Cristina","family":"Pamfil","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jose M.","family":"Pego-Reigosa","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8194-3243","authenticated-orcid":false,"given":"Jutta G.","family":"Richter","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Savino","family":"Sciascia","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Farah","family":"Tamirou","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4982-3505","authenticated-orcid":false,"given":"Michel","family":"Tsang-A-Sjoe","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Edward M.","family":"Vital","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Ronald","family":"Van Vollenhoven","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8742-8311","authenticated-orcid":false,"given":"Chris","family":"Wincup","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0009-0007-2106-9196","authenticated-orcid":false,"given":"Matthias","family":"Schneider","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"78","reference":[{"issue":"8","key":"10.1016\/j.ard.2025.07.001_bib0001","doi-asserted-by":"crossref","first-page":"700","DOI":"10.1016\/j.amjmed.2005.11.034","article-title":"Long-term prognosis and causes of death in systemic lupus erythematosus","volume":"119","author":"Doria","year":"2006","journal-title":"Am J Med"},{"issue":"2","key":"10.1016\/j.ard.2025.07.001_bib0002","doi-asserted-by":"crossref","first-page":"195","DOI":"10.1136\/ard.2007.070367","article-title":"EULAR recommendations for the management of systemic lupus erythematosus. Report of a task force of the EULAR Standing Committee for International Clinical Studies Including Therapeutics","volume":"67","author":"Bertsias","year":"2008","journal-title":"Ann Rheum Dis"},{"issue":"6","key":"10.1016\/j.ard.2025.07.001_bib0003","doi-asserted-by":"crossref","first-page":"736","DOI":"10.1136\/annrheumdis-2019-215089","article-title":"2019 update of the EULAR recommendations for the management of systemic lupus erythematosus","volume":"78","author":"Fanouriakis","year":"2019","journal-title":"Ann Rheum Dis"},{"issue":"6","key":"10.1016\/j.ard.2025.07.001_bib0004","doi-asserted-by":"crossref","first-page":"713","DOI":"10.1136\/annrheumdis-2020-216924","article-title":"2019 Update of the Joint European League Against Rheumatism and European Renal Association-European Dialysis and Transplant Association (EULAR\/ERA-EDTA) recommendations for the management of lupus nephritis","volume":"79","author":"Fanouriakis","year":"2020","journal-title":"Ann Rheum Dis"},{"key":"10.1016\/j.ard.2025.07.001_bib0005","doi-asserted-by":"crossref","first-page":"15","DOI":"10.1136\/ard-2023-224762","article-title":"EULAR recommendations for the management of systemic lupus erythematosus: 2023 update","volume":"83","author":"Fanouriakis","year":"2024","journal-title":"Ann Rheum Dis"},{"issue":"4","key":"10.1016\/j.ard.2025.07.001_bib0006","doi-asserted-by":"crossref","first-page":"431","DOI":"10.1177\/0961203313517015","article-title":"Trends in systemic lupus erythematosus mortality in Spain from 1981 to 2010","volume":"23","author":"Ruiz","year":"2014","journal-title":"Lupus"},{"issue":"7","key":"10.1016\/j.ard.2025.07.001_bib0007","doi-asserted-by":"crossref","first-page":"727","DOI":"10.1177\/0961203315627202","article-title":"Overall and cause-specific mortality in systemic lupus erythematosus: an updated meta-analysis","volume":"25","author":"Lee","year":"2016","journal-title":"Lupus"},{"key":"10.1016\/j.ard.2025.07.001_bib0008","unstructured":"European Alliance of Associations for Rheumatology. RheumaMap-Research Roadmap to transform the lives of people with rheumatic and musculoskeletal diseases 2019. [ cited 2024 Nov 23 ] https:\/\/www.eular.org\/web\/static\/lib\/pdfjs\/web\/viewer.html?file= https:\/\/www.eular.org\/document\/download\/184\/9ad4d185-1db2-4018-b343-7668837ffdab\/188."},{"issue":"4","key":"10.1016\/j.ard.2025.07.001_bib0009","doi-asserted-by":"crossref","first-page":"194","DOI":"10.1038\/s41584-019-0190-1","article-title":"Measuring disease activity in SLE is an ongoing struggle","volume":"15","author":"Askanase","year":"2019","journal-title":"Nat Rev Rheumatol"},{"issue":"Suppl 3","key":"10.1016\/j.ard.2025.07.001_bib0010","doi-asserted-by":"crossref","first-page":"iii61","DOI":"10.1136\/ard.2007.078477","article-title":"Disease activity assessment in SLE: do we have the right instruments?","volume":"66","author":"Petri","year":"2007","journal-title":"Ann Rheum Dis"},{"key":"10.1016\/j.ard.2025.07.001_bib0011","article-title":"An overlook on the current registries for rare and complex connective tissue diseases and the future scenario of TogethERN ReCONNET","volume":"9","author":"Bandeira","year":"2022","journal-title":"Front Med (Lausanne)"},{"issue":"1","key":"10.1016\/j.ard.2025.07.001_bib0012","doi-asserted-by":"crossref","first-page":"164","DOI":"10.1186\/s12874-020-01057-0","article-title":"The challenges in data integration - heterogeneity and complexity in clinical trials and patient registries of systemic lupus erythematosus","volume":"20","author":"Le Sueur","year":"2020","journal-title":"BMC Med Res Methodol"},{"issue":"1","key":"10.1016\/j.ard.2025.07.001_bib0013","doi-asserted-by":"crossref","DOI":"10.1136\/lupus-2021-000538","article-title":"2021 DORIS definition of remission in SLE: final recommendations from an international task force","volume":"8","author":"van Vollenhoven","year":"2021","journal-title":"Lupus Sci Med"},{"issue":"9","key":"10.1016\/j.ard.2025.07.001_bib0014","doi-asserted-by":"crossref","first-page":"1615","DOI":"10.1136\/annrheumdis-2015-207726","article-title":"Definition and initial validation of a lupus low disease activity state (LLDAS)","volume":"75","author":"Franklyn","year":"2016","journal-title":"Ann Rheum Dis"},{"key":"10.1016\/j.ard.2025.07.001_bib0015","doi-asserted-by":"crossref","DOI":"10.1038\/sdata.2016.18","article-title":"The FAIR guiding principles for scientific data management and stewardship","volume":"3","author":"Wilkinson","year":"2016","journal-title":"Sci Data"},{"issue":"9","key":"10.1016\/j.ard.2025.07.001_bib0016","doi-asserted-by":"crossref","first-page":"1160","DOI":"10.1136\/annrheumdis-2018-214755","article-title":"2018 EULAR recommendations for a core data set to support observational research and clinical care in giant cell arteritis","volume":"78","author":"Ehlers","year":"2019","journal-title":"Ann Rheum Dis"},{"issue":"1","key":"10.1016\/j.ard.2025.07.001_bib0017","doi-asserted-by":"crossref","first-page":"8","DOI":"10.1136\/annrheumdis-2014-206350","article-title":"2014 Update of the EULAR standardised operating procedures for EULAR-endorsed recommendations","volume":"74","author":"van der Heijde","year":"2015","journal-title":"Ann Rheum Dis"},{"issue":"7","key":"10.1016\/j.ard.2025.07.001_bib0018","doi-asserted-by":"crossref","first-page":"1269","DOI":"10.1136\/ard.2009.117200","article-title":"European League Against Rheumatism recommendations for monitoring patients with systemic lupus erythematosus in clinical practice and in observational studies","volume":"69","author":"Mosca","year":"2010","journal-title":"Ann Rheum Dis"},{"key":"10.1016\/j.ard.2025.07.001_bib0019","doi-asserted-by":"crossref","first-page":"49","DOI":"10.1136\/annrheumdis-2020-218356","article-title":"EULAR recommendations for a core data set for pregnancy registries in rheumatology","volume":"80","author":"Meissner","year":"2021","journal-title":"Ann Rheum Dis"},{"issue":"4","key":"10.1016\/j.ard.2025.07.001_bib0020","doi-asserted-by":"crossref","first-page":"476","DOI":"10.1136\/annrheumdis-2017-212256","article-title":"2017 EULAR recommendations for a core data set to support observational research and clinical care in rheumatoid arthritis","volume":"77","author":"Radner","year":"2018","journal-title":"Ann Rheum Dis"},{"issue":"6","key":"10.1016\/j.ard.2025.07.001_bib0021","doi-asserted-by":"crossref","first-page":"965","DOI":"10.1136\/annrheumdis-2016-209233","article-title":"Points to consider for reporting, screening for and preventing selected comorbidities in chronic inflammatory rheumatic diseases in daily practice: a EULAR initiative","volume":"75","author":"Baillet","year":"2016","journal-title":"Ann Rheum Dis"},{"issue":"9","key":"10.1016\/j.ard.2025.07.001_bib0022","doi-asserted-by":"crossref","first-page":"1151","DOI":"10.1136\/annrheumdis-2018-214819","article-title":"2019 European League Against Rheumatism\/American College of Rheumatology classification criteria for systemic lupus erythematosus","volume":"78","author":"Aringer","year":"2019","journal-title":"Ann Rheum Dis"},{"issue":"12","key":"10.1016\/j.ard.2025.07.001_bib0023","doi-asserted-by":"crossref","first-page":"1895","DOI":"10.1002\/acr.22372","article-title":"Relevant concepts of functioning for patients with systemic lupus erythematosus identified in a Delphi exercise of experts and a literature review","volume":"66","author":"Leuchten","year":"2014","journal-title":"Arthritis Care Res (Hoboken)"},{"issue":"11","key":"10.1016\/j.ard.2025.07.001_bib0024","doi-asserted-by":"crossref","DOI":"10.1371\/journal.pmed.1002447","article-title":"Core Outcome Set-STAndards for Development: the COS-STAD recommendations","volume":"14","author":"Kirkham","year":"2017","journal-title":"PLoS Med"},{"issue":"6","key":"10.1016\/j.ard.2025.07.001_bib0025","doi-asserted-by":"crossref","first-page":"768","DOI":"10.1136\/annrheumdis-2021-221733","article-title":"EULAR recommendations for cardiovascular risk management in rheumatic and musculoskeletal diseases, including systemic lupus erythematosus and antiphospholipid syndrome","volume":"81","author":"Drosos","year":"2022","journal-title":"Ann Rheum Dis"},{"issue":"2","key":"10.1016\/j.ard.2025.07.001_bib0026","first-page":"288","article-title":"Systemic lupus erythematosus disease activity index 2000","volume":"29","author":"Gladman","year":"2002","journal-title":"J Rheumatol"},{"issue":"3","key":"10.1016\/j.ard.2025.07.001_bib0027","doi-asserted-by":"crossref","first-page":"365","DOI":"10.1136\/annrheumdis-2018-214502","article-title":"Derivation and validation of the SLE Disease Activity Score (SLE-DAS): a new SLE continuous measure with high sensitivity for changes in disease activity","volume":"78","author":"Jesus","year":"2019","journal-title":"Ann Rheum Dis"},{"issue":"7","key":"10.1016\/j.ard.2025.07.001_bib0028","doi-asserted-by":"crossref","first-page":"902","DOI":"10.1093\/rheumatology\/keh624","article-title":"BILAG 2004. Development and initial validation of an updated version of the British Isles Lupus Assessment Group\u2019s disease activity index for patients with systemic lupus erythematosus","volume":"44","author":"Isenberg","year":"2005","journal-title":"Rheumatology (Oxford)"},{"issue":"3","key":"10.1016\/j.ard.2025.07.001_bib0029","doi-asserted-by":"crossref","first-page":"363","DOI":"10.1002\/art.1780390303","article-title":"The development and initial validation of the systemic lupus international collaborating clinics\/American College of Rheumatology damage index for systemic lupus erythematosus","volume":"39","author":"Gladman","year":"1996","journal-title":"Arthritis Rheum"},{"issue":"5","key":"10.1016\/j.ard.2025.07.001_bib0030","doi-asserted-by":"crossref","first-page":"998","DOI":"10.1002\/acr.24849","article-title":"Evaluating the construct of damage in systemic lupus erythematosus","volume":"75","author":"Johnson","year":"2023","journal-title":"Arthritis Care Res (Hoboken)"},{"issue":"9","key":"10.1016\/j.ard.2025.07.001_bib0031","doi-asserted-by":"crossref","first-page":"592","DOI":"10.1038\/s41584-023-00993-7","article-title":"Towards a novel clinical outcome assessment for systemic lupus erythematosus: first outcomes of an international taskforce","volume":"19","author":"Connelly","year":"2023","journal-title":"Nat Rev Rheumatol"},{"key":"10.1016\/j.ard.2025.07.001_bib0032","doi-asserted-by":"crossref","DOI":"10.1016\/j.semarthrit.2025.152684","article-title":"Scoping literature review to identify candidate domains for the OMERACT systemic lupus erythematosus core outcome set","volume":"72","author":"Nielsen","year":"2025","journal-title":"Semin Arthritis Rheum"},{"key":"10.1016\/j.ard.2025.07.001_bib0033","doi-asserted-by":"crossref","DOI":"10.1016\/j.semarthrit.2024.152520","article-title":"OMERACT systemic lupus erythematosus domain survey","volume":"68","author":"Nielsen","year":"2024","journal-title":"Semin Arthritis Rheum"},{"issue":"2","key":"10.1016\/j.ard.2025.07.001_bib0034","first-page":"504","article-title":"Randomized clinical trials and longitudinal observational studies in systemic lupus erythematosus: consensus on a preliminary core set of outcome domains","volume":"26","author":"Smolen","year":"1999","journal-title":"J Rheumatol"},{"key":"10.1016\/j.ard.2025.07.001_bib0035","unstructured":"SNOMED International. SNOMED CT 2024 [cited 2024 Mar 21]. Available from: https:\/\/www.snomed.org\/"}],"container-title":["Annals of the Rheumatic Diseases"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S0003496725042347?httpAccept=text\/xml","content-type":"text\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S0003496725042347?httpAccept=text\/plain","content-type":"text\/plain","content-version":"vor","intended-application":"text-mining"}],"deposited":{"date-parts":[[2026,4,29]],"date-time":"2026-04-29T10:03:38Z","timestamp":1777457018000},"score":1,"resource":{"primary":{"URL":"https:\/\/linkinghub.elsevier.com\/retrieve\/pii\/S0003496725042347"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,10]]},"references-count":35,"journal-issue":{"issue":"10","published-print":{"date-parts":[[2025,10]]}},"alternative-id":["S0003496725042347"],"URL":"https:\/\/doi.org\/10.1016\/j.ard.2025.07.001","relation":{},"ISSN":["0003-4967"],"issn-type":[{"value":"0003-4967","type":"print"}],"subject":[],"published":{"date-parts":[[2025,10]]},"assertion":[{"value":"Elsevier","name":"publisher","label":"This article is maintained by"},{"value":"EULAR recommendations for a core dataset to support clinical care and translational and observational research in systemic lupus erythematosus","name":"articletitle","label":"Article Title"},{"value":"Annals of the Rheumatic Diseases","name":"journaltitle","label":"Journal Title"},{"value":"https:\/\/doi.org\/10.1016\/j.ard.2025.07.001","name":"articlelink","label":"CrossRef DOI link to publisher maintained version"},{"value":"article","name":"content_type","label":"Content Type"},{"value":"\u00a9 2025 The Author(s). Published by Elsevier B.V. on behalf of European Alliance of Associations for Rheumatology (EULAR).","name":"copyright","label":"Copyright"}]}}