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Internet-based studies can overcome barriers of traditional on-site research and are therefore very appealing for rare diseases. The aim of this study was to investigate patient-reported symptoms, diagnostic delay, symptoms, medical care, health status, working status, disease knowledge and willingness to participate in research of ASSD patients by conducting an international web-based survey. The multilingual questionnaire was created by an international group of rheumatologists and patients and distributed online. 236 participants from 22 countries completed the survey. 184\/236 (78.0%) were female, mean age (SD) was 49.6\u00a0years (11.3) and most common antisynthetase antibody was Jo-1 (169\/236, 71.6%). 79\/236 (33.5%) reported to work full-time. Median diagnostic delay was one year. The most common symptom at disease onset was fatigue 159\/236 (67.4%), followed by myalgia 130\/236 (55.1%). The complete triad of myositis, arthritis and lung involvement verified by a clinician was present in 42\/236 (17.8%) at disease onset and in 88\/236 (37.3%) during the disease course. 36\/236 (15.3%) reported to have been diagnosed with fibromyalgia and 40\/236 (16.3%) with depression. The most reported immunosuppressive treatments were oral corticosteroids 179\/236 (75.9%), followed by rituximab 85\/236 (36.0%). 73\/236 (30.9%) had received physiotherapy treatment. 71\/236 (30.1%) reported to know useful online information sources related to ASSD. 223\/236 (94.5%) were willing to share health data for research purposes once a year. Our results reiterate that internet-based research is invaluable for cooperating with patients to foster knowledge in rare diseases.<\/jats:p>","DOI":"10.1007\/s00296-023-05372-9","type":"journal-article","created":{"date-parts":[[2023,7,15]],"date-time":"2023-07-15T08:02:06Z","timestamp":1689408126000},"page":"1925-1934","update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":8,"title":["Healthcare utilization and unmet needs of patients with antisynthetase syndrome: An international patient survey"],"prefix":"10.1007","volume":"43","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-6406-831X","authenticated-orcid":false,"given":"M.","family":"Weiss","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-2064-6728","authenticated-orcid":false,"given":"M. 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