{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,19]],"date-time":"2026-10-19T21:36:02Z","timestamp":1792445762688,"version":"4.5.0"},"reference-count":25,"publisher":"Wiley","issue":"9","license":[{"start":{"date-parts":[[2026,4,14]],"date-time":"2026-04-14T00:00:00Z","timestamp":1776124800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"},{"start":{"date-parts":[[2026,4,14]],"date-time":"2026-04-14T00:00:00Z","timestamp":1776124800000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1.1"}],"funder":[{"DOI":"10.13039\/100007238","name":"Office of Women's Health","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100007238","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100000002","name":"National Institutes of Health","doi-asserted-by":"publisher","award":["ZIAES101081"],"award-info":[{"award-number":["ZIAES101081"]}],"id":[{"id":"10.13039\/100000002","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100000092","name":"U.S. National Library of Medicine","doi-asserted-by":"publisher","award":["ZIALM202402"],"award-info":[{"award-number":["ZIALM202402"]}],"id":[{"id":"10.13039\/100000092","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["acrjournals.onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Arthritis Care &amp;amp; Research"],"published-print":{"date-parts":[[2026,9]]},"abstract":"<jats:sec>\n                    <jats:title>Objective<\/jats:title>\n                    <jats:p>Recent progress has been made in developing validated myositis outcome measures. However, critical deficiencies remain for data standardization across myositis registries. Although the National Institutes of Health (NIH) Common Data Elements (CDE) Repository has been developed to facilitate standardized data collection and sharing, few myositis\u2010specific CDEs currently exist. We developed CDEs for myositis outcome measures using novel data science strategies.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>Data dictionaries of myositis registries were examined to understand how outcome measures are currently captured. We used the Linked data Modeling Language, an open\u2010source data modeling framework, to develop computable CDEs. After drafting CDEs for myositis core set measures (CSMs), an international conference was held with an expert myositis panel to reach consensus on the coding of CDEs and prioritize additional measures for CDE creation, using Delphi and modified nominal group techniques. This workflow was repeated for the prioritized measures in the second phase.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>A workflow was established for CDE creation. CDEs for 10 myositis CSMs were drafted. After receiving comments to improve their coding, universal agreement among participants was reached for CSM CDEs. The prioritized measures for future CDEs included myositis response and classification criteria, damage measures, physical function measures, and Patient\u2010Reported Outcomes Measurement Information System instruments. CDEs for 18 additional measures were discussed at a second consensus conference. Similarly, high agreement rates were achieved, except for flare criteria. Altogether, 852 new CDEs were created for 27 myositis forms and achieved consensus, readying their deposit in the NIH CDE Repository.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>Leveraging multispecialty expertise in myositis and its patient communities and data science expertise of the National Library of Medicine, the first myositis\u2010specific CDEs have been developed to accelerate the ability to conduct interoperable myositis clinical studies and therapeutic trials. The workflow established here should also benefit creation of CDEs and data sharing for other autoimmune diseases.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1002\/acr.80032","type":"journal-article","created":{"date-parts":[[2026,3,8]],"date-time":"2026-03-08T15:55:58Z","timestamp":1772985358000},"page":"1101-1111","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":2,"title":["Standardized Interoperable Data Collection for Myositis Research: Developing Expert Consensus on Common Data Elements for Myositis Outcome Measures"],"prefix":"10.1002","volume":"78","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-1675-597X","authenticated-orcid":false,"given":"Didem","family":"Saygin","sequence":"first","affiliation":[{"name":"Rush University Medical Center  Chicago Illinois"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Matthew","family":"Diller","sequence":"additional","affiliation":[{"name":"National Library of Medicine, NIH  Bethesda Maryland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Varsha","family":"Surampudi","sequence":"additional","affiliation":[{"name":"DLH, LLC  Bethesda Maryland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mark","family":"Bodkin","sequence":"additional","affiliation":[{"name":"DLH, LLC  Bethesda Maryland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Payam Noroozi","family":"Farhadi","sequence":"additional","affiliation":[{"name":"National Institute of Environmental Health Sciences, NIH  Bethesda Maryland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1429-8392","authenticated-orcid":false,"given":"Christopher A.","family":"Mecoli","sequence":"additional","affiliation":[{"name":"Johns Hopkins University School of Medicine  Baltimore Maryland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Audrey","family":"Kessel","sequence":"additional","affiliation":[{"name":"DLH, LLC  Bethesda Maryland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7531-8038","authenticated-orcid":false,"given":"Rohit","family":"Aggarwal","sequence":"additional","affiliation":[{"name":"University of Pittsburgh School of Medicine  Pittsburgh Pennsylvania"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Helene","family":"Alexanderson","sequence":"additional","affiliation":[{"name":"Karolinska University Hospital, Karolinska Institutet, Stockholm  Sweden"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Anthony","family":"Amato","sequence":"additional","affiliation":[{"name":"Brigham and Women's Hospital, Harvard Medical School  Boston Massachusetts"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6523-0374","authenticated-orcid":false,"given":"Christie M.","family":"Bartels","sequence":"additional","affiliation":[{"name":"University of Wisconsin School of Medicine and Public Health  Madison"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Olivier","family":"Benveniste","sequence":"additional","affiliation":[{"name":"Sorbonne Universit\u00e9, H\u00f4pital de la Piti\u00e9\u2010Salp\u00eatri\u00e8re  Paris France"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Michelle","family":"Best","sequence":"additional","affiliation":[{"name":"Cure JM Foundation  Leesburg Virginia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6492-1288","authenticated-orcid":false,"given":"Hector","family":"Chinoy","sequence":"additional","affiliation":[{"name":"Salford Royal Hospital, Northern Care Alliance NHS Foundation Trust, Manchester Academic Health Science Centre  Salford United Kingdom"},{"name":"The University of Manchester  Manchester United Kingdom"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ingrid","family":"de Groot","sequence":"additional","affiliation":[{"name":"Spierziekten Nederland  Baarn the Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Brian","family":"Feldman","sequence":"additional","affiliation":[{"name":"University of Toronto  Toronto Ontario Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Adam M.","family":"Huber","sequence":"additional","affiliation":[{"name":"IWK Health Centre and Dalhousie University  Nova Scotia Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0595-6533","authenticated-orcid":false,"given":"Hanna","family":"Kim","sequence":"additional","affiliation":[{"name":"National Institute of Arthritis Musculoskeletal and Skin Diseases, NIH  Bethesda Maryland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-2159-8059","authenticated-orcid":false,"given":"Susan","family":"Kim","sequence":"additional","affiliation":[{"name":"University of California San Francisco"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Linda","family":"Kobert","sequence":"additional","affiliation":[{"name":"The Myositis Association  Columbia Maryland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8643-6697","authenticated-orcid":false,"given":"Valerie","family":"Leclair","sequence":"additional","affiliation":[{"name":"McGill University  Montreal Quebec Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Manuel","family":"Lubinus","sequence":"additional","affiliation":[{"name":"Myositis Support and Understanding  Lincoln Delaware"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8411-7972","authenticated-orcid":false,"given":"Pedro M.","family":"Machado","sequence":"additional","affiliation":[{"name":"University College London  London United Kingdom"},{"name":"NIHR University College London Hospitals Biomedical Research Centre, University College London Hospitals NHS Foundation Trust  London United Kingdom"},{"name":"Northwick Park Hospital, London North West University Healthcare NHS Trust  London United Kingdom"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3732-3252","authenticated-orcid":false,"given":"Andrew","family":"Mammen","sequence":"additional","affiliation":[{"name":"National Institute of Arthritis Musculoskeletal and Skin Diseases, NIH  Bethesda Maryland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Liza J.","family":"McCann","sequence":"additional","affiliation":[{"name":"Alder Hey Children's NHS Foundation Trust  Liverpool United Kingdom"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Tahseen","family":"Mozaffar","sequence":"additional","affiliation":[{"name":"University of California Irvine School of Medicine"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-9529-3111","authenticated-orcid":false,"given":"Chester","family":"Oddis","sequence":"additional","affiliation":[{"name":"University of Pittsburgh School of Medicine  Pittsburgh Pennsylvania"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8436-1601","authenticated-orcid":false,"given":"Julie J.","family":"Paik","sequence":"additional","affiliation":[{"name":"Johns Hopkins University School of Medicine  Baltimore Maryland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-9658-0385","authenticated-orcid":false,"given":"Angelo","family":"Ravelli","sequence":"additional","affiliation":[{"name":"IRCCS Istituto Giannina Gaslini University of Genoa  Genoa Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nicolino","family":"Ruperto","sequence":"additional","affiliation":[{"name":"Universit\u00e0 Milano Bicocca IRCCS Fondazione San Gerardo dei Tintori  Milano Italy"},{"name":"Fondazione IRCCS San Gerardo dei Tintori, Fondazione Paediatric Rheumatology International Trials Organization  Monza Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jens","family":"Schmidt","sequence":"additional","affiliation":[{"name":"Immanuel University Hospital Ruedersdorf, Brandenburg Medical School  Rudersdorf 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G.","family":"Rider","sequence":"additional","affiliation":[{"name":"National Institute of Environmental Health Sciences, NIH  Bethesda Maryland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"name":"for the IMACS Myositis CDE Working 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December 20 2022\u2013 Issue: Vol. 168 No. 198 \u2014 Daily Edition. Senate Section.https:\/\/www.congress.gov\/congressional-record\/volume-168\/issue-198\/senate-section\/article\/S8553-2"},{"key":"e_1_2_6_14_1","doi-asserted-by":"publisher","DOI":"10.1038\/sdata.2016.18"},{"key":"e_1_2_6_15_1","doi-asserted-by":"publisher","DOI":"10.1136\/annrheumdis-2017-211868"},{"key":"e_1_2_6_16_1","doi-asserted-by":"publisher","DOI":"10.1093\/rheumatology\/keq261"},{"key":"e_1_2_6_17_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jbi.2020.103421"},{"key":"e_1_2_6_18_1","first-page":"148","article-title":"The Linked data Modeling Language (LinkML): a general\u2010purpose data modeling framework grounded in machine\u2010readable semantics","volume":"3073","author":"Moxon SA","year":"2021","journal-title":"CEUR Workshop Proceedings"},{"key":"e_1_2_6_19_1","doi-asserted-by":"publisher","DOI":"10.3899\/jrheum.091474"},{"key":"e_1_2_6_20_1","doi-asserted-by":"publisher","DOI":"10.1002\/acr.20035"},{"key":"e_1_2_6_21_1","doi-asserted-by":"publisher","DOI":"10.1002\/art.40060"},{"key":"e_1_2_6_22_1","doi-asserted-by":"publisher","DOI":"10.1136\/annrheumdis\u20102017\u2010211400"},{"issue":"9","key":"e_1_2_6_23_1","article-title":"Validation of PROMIS in adult and pediatric patients with idiopathic inflammatory myopathies [abstract]","volume":"75","author":"Austenfeld E","year":"2023","journal-title":"Arthritis Rheumatol"},{"key":"e_1_2_6_24_1","doi-asserted-by":"publisher","DOI":"10.3899\/jrheum.191374"},{"key":"e_1_2_6_25_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.semarthrit.2025.152809"},{"key":"e_1_2_6_26_1","doi-asserted-by":"publisher","DOI":"10.1002\/art.21291"}],"container-title":["Arthritis Care &amp; Research"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/acrjournals.onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/acr.80032","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/acrjournals.onlinelibrary.wiley.com\/doi\/full-xml\/10.1002\/acr.80032","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/acrjournals.onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/acr.80032","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,8,26]],"date-time":"2026-08-26T14:49:23Z","timestamp":1787755763000},"score":1,"resource":{"primary":{"URL":"https:\/\/acrjournals.onlinelibrary.wiley.com\/doi\/10.1002\/acr.80032"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,4,14]]},"references-count":25,"journal-issue":{"issue":"9","published-print":{"date-parts":[[2026,9]]}},"alternative-id":["10.1002\/acr.80032"],"URL":"https:\/\/doi.org\/10.1002\/acr.80032","archive":["Portico"],"relation":{},"ISSN":["2151-464X","2151-4658"],"issn-type":[{"value":"2151-464X","type":"print"},{"value":"2151-4658","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,4,14]]},"assertion":[{"value":"2025-12-08","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2026-02-20","order":2,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2026-04-14","order":3,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}