The EuroMyositis registry: an international collaborative tool to facilitate myositis research. Issue 1 (30th August 2017)

• Record Type: Journal Article
• Authors: Lilleker, James B; Vencovsky, Jiri; Wang, Guochun; Wedderburn, Lucy R; Diederichsen, Louise Pyndt; Schmidt, Jens; Oakley, Paula; Benveniste, Olivier; Danieli, Maria Giovanna; Danko, Katalin; Thuy, Nguyen Thi Phuong; Vazquez-Del Mercado, Monica; Andersson, Helena; De Paepe, Boel; deBleecker, Jan L; Maurer, Britta; McCann, Liza J; Pipitone, Nicolo; McHugh, Neil; Betteridge, Zoe E; New, Paul; Cooper, Robert G; Ollier, William E; Lamb, Janine A; Krogh, Niels Steen; Lundberg, Ingrid E; Chinoy, Hector
• Other Names: author non-byline.; D'hose Sophie author non-byline.; Tian Xin Lu, xiaolan author non-byline.; Mann Herman author non-byline.; Kryštufková Olga author non-byline.; Pleštilová Lenka author non-byline.; Barochová, katerina kubínová Martin Klein, tereza author non-byline.; Gelardi Chiara author non-byline.; Pedini Veronica author non-byline.; Cardinaletti Paolo author non-byline.; Jara Luis J author non-byline.; Saavedra Miguel A author non-byline.; Cruz-reyes Claudia V author non-byline.; Vera-lastra Olga author non-byline.; Andrade-ortega Lilia author non-byline.; Medrano-ramírez Gabriel author non-byline.; Satoh Minoru author non-byline.; Salazar-páramo Mario author non-byline.; Gomez-bañuelos Eduardo author non-byline.; Aguilar-arreola Jorge author non-byline.; Durán-barragán Sergio author non-byline.; Navarro-hernandez Rosa Elena author non-byline.; Petri Marcelo H author non-byline.; Molberg Øyvind author non-byline.; Dastmalchi Maryam author non-byline.; Notarnicola Antonella author non-byline.; Gheorghe Karina author non-byline.; Rönnelid Johan author non-byline.; Liden Maria author non-byline.; Hanna Balsam author non-byline.; Jalal Awat author non-byline.; Hellström Helena author non-byline.; Martineus Jehns Christian author non-byline.; Ngoc lan Nguyen Thi author non-byline.; Padyukov Leonid author non-byline.; New Paul author non-byline.; Platt Hazel author non-byline.; Rothwell Simon author non-byline.; Ahmed Yasmeen author non-byline.; Armstrong Raymond author non-byline.; Bernstein Robert author non-byline.; Black Carol author non-byline.; Bowman Simon author non-byline.; Bruce Ian author non-byline.; Butler Robin author non-byline.; Carty John author non-byline.; Chattopadhyay Chandra author non-byline.; Chelliah Easwaradhas author non-byline.; Clarke Fiona author non-byline.; Dawes Peter author non-byline.; Denton Christopher author non-byline.; Devlin Joseph author non-byline.; Edwards Christopher author non-byline.; Emery Paul author non-byline.; Fordham John author non-byline.; Fraser Alexander author non-byline.; Gaston Hill author non-byline.; Gordon Patrick author non-byline.; Griffiths Bridget author non-byline.; Gunawardena Harsha author non-byline.; Hall Frances author non-byline.; Hanna Michael author non-byline.; Harrison Beverley author non-byline.; Hay Elaine author non-byline.; Hilton-jones David author non-byline.; Horden Lesley author non-byline.; Isaacs John author non-byline.; Isenberg David author non-byline.; Jones Adrian author non-byline.; Kamath Sanjeet author non-byline.; Kennedy Thomas author non-byline.; Kitas George author non-byline.; Klimiuk Peter author non-byline.; Knights Sally author non-byline.; Lambert John author non-byline.; Lanyon Peter author non-byline.; Laxminarayan Ramasharan author non-byline.; Lecky Bryan author non-byline.; Luqmani Raashid author non-byline.; Machado Pedro author non-byline.; Marks Jeffrey author non-byline.; Martin Michael author non-byline.; Mcgonagle Dennis author non-byline.; Mchugh Neil author non-byline.; Mckenna Francis author non-byline.; Mclaren John author non-byline.; Mcmahon Michael author non-byline.; Mcrorie Euan author non-byline.; Merry Peter author non-byline.; Miles Sarah author non-byline.; Miller James author non-byline.; Nicholls Anne author non-byline.; Nixon Jennifer author non-byline.; Ong Voon author non-byline.; Over Katherine author non-byline.; Packham John author non-byline.; Pipitone Nicolo author non-byline.; Plant Michael author non-byline.; Pountain Gillian author non-byline.; Pullar Thomas author non-byline.; Roberts Mark author non-byline.; Sanders Paul author non-byline.; Scott David author non-byline.; Scott David author non-byline.; Shadforth Michael author non-byline.; Sheeran Thomas author non-byline.; Srinivasan Arul author non-byline.; Swinson David author non-byline.; Teh Lee-suan author non-byline.; Webley Michael author non-byline.; Williams Brian author non-byline.; Winer Jonathan author non-byline.;
• Is Part Of: Annals of the rheumatic diseases. Volume 77:Issue 1(2018)
• Page Start: 30
• Page End: 39
• Publication Date: 2017-08-30
• Subjects: Disease registries -- Myositis; Rheumatism -- Periodicals; 616.723005
• DOI: 10.1136/annrheumdis-2017-211868
• Languages: English
• ISSNs: 0003-4967

Abstract

Abstract : Aims: The EuroMyositis Registry facilitates collaboration across the idiopathic inflammatory myopathy (IIM) research community. This inaugural report examines pooled Registry data. Methods: Cross-sectional analysis of IIM cases from 11 countries was performed. Associations between clinical subtypes, extramuscular involvement, environmental exposures and medications were investigated. Results: Of 3067 IIM cases, 69% were female. The most common IIM subtype was dermatomyositis (DM) (31%). Smoking was more frequent in connective tissue disease overlap cases (45%, OR 1.44, 95% CI 1.09 to 1.90, p=0.012). Smoking was associated with interstitial lung disease (ILD) (OR 1.32, 95% CI 1.06 to 1.65, p=0.013), dysphagia (OR 1.43, 95% CI 1.16 to 1.77, p=0.001), malignancy ever (OR 1.78, 95% CI 1.36 to 2.33, p<0.001) and cardiac involvement (OR 2.40, 95% CI 1.60 to 3.60, p<0.001). Dysphagia occurred in 39% and cardiac involvement in 9%; either occurrence was associated with higher Health Assessment Questionnaire (HAQ) scores (adjusted OR 1.79, 95% CI 1.43 to 2.23, p<0.001). HAQ scores were also higher in inclusion body myositis cases (adjusted OR 3.85, 95% CI 2.52 to 5.90, p<0.001). Malignancy (ever) occurred in 13%, most commonly in DM (20%, OR 2.06, 95% CI 1.65 to 2.57, p<0.001). ILD occurred in 30%, most frequently in antisynthetase syndrome (71%, OR 10.7, 95% CI 8.6 to 13.4, p<0.001). Rash characteristics differed between adult-onset and juvenile-onset DM cases ('V' sign: 56% DM vs 16% juvenile-DM, OR 0.16, 95% CI 0.07 to 0.36, p<0.001). Glucocorticoids were used in 98% of cases, methotrexate in 71% and azathioprine in 51%. Conclusion: This large multicentre cohort demonstrates the importance of extramuscular involvement in patients with IIM, its association with smoking and its influence on disease severity. Our findings emphasise that IIM is a multisystem inflammatory disease and will help inform prognosis and clinical management of patients.