Disease characteristics and medications use in idiopathic inflammatory myopathy: a multi-centre prospective observational study of decentralized remote vs. traditional clinic enrolment.
Objectives Idiopathic inflammatory myopathies (IIM) are rare and characterized by heterogeneous manifestations and clinical trajectories. Utilizing tele-research methods has the potential to improve participant recruitment and advance the understanding of the disease. We aimed to evaluate disease ch...
| Publicado en: | Rheumatology Vol. 64; no. 3; pp. 2099 - 2106 |
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| Autores principales: | , , , , , , , , |
| Formato: | pictorial research tables/charts Journal Article |
| Publicado: |
Oxford University Press / USA
Mar2025
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| Acceso en línea: | Ver este registro en EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=184408845&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 184408845 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 14620324 DN9 jtl: Rheumatology issn: 14620324 maglogo: N pubinfo: dt: Mar2025 vid: 64 iid: 3 pid: 622 pub: Oxford University Press / USA artinfo: ui: 184408845 184408845 184408845 10.1093/rheumatology/keae467 184408845 ppf: 2099 ppct: 7 formats: tig: atl: Disease characteristics and medications use in idiopathic inflammatory myopathy: a multi-centre prospective observational study of decentralized remote vs. traditional clinic enrolment. aug: au: Keret, Shiri Silva, Raisa Lomanto Chandra, Tanya Gkiaouraki, Eugenia Pongtarakulpanit, Nantakarn Sriram, Shreya Moghadam-Kia, Siamak Oddis, Chester V Aggarwal, Rohit affil: Rheumatology Unit, Bnai-Zion Medical Center, Faculty of Medicine, Technion, Haifa, Israel sug: subj: Disease Attributes Myositis Drug Therapy Research Subject Recruitment Telehealth Mobile Applications World Wide Web Office Visits Human Funding Source Male Female Adult Middle Age Aged Multicenter Studies Prospective Studies Nonexperimental Studies United States Social Media Descriptive Statistics Hispanic Americans White Persons Dermatomyositis Polymyositis Antisynthetase Syndrome Employment Status Diagnosis, Delayed Physician Attitudes Treatment Outcomes Respiratory Function Tests Radiography, Thoracic Electromyography Patient-Reported Outcomes Adult: 19-44 years Middle Aged: 45-64 years Aged: 65+ years Male Female ab: Objectives Idiopathic inflammatory myopathies (IIM) are rare and characterized by heterogeneous manifestations and clinical trajectories. Utilizing tele-research methods has the potential to improve participant recruitment and advance the understanding of the disease. We aimed to evaluate disease characteristics in IIM patients throughout the USA and compare these parameters between patients recruited remotely through mobile application or website vs those recruited locally in myositis clinics. Methods 'Myositis Patient Centered Tele-Research' (My PACER) is a multicentre prospective observational study of US IIM subjects, competitively recruited through traditional in-person clinic visits [centre-based cohort (CBC)] and remotely using mobile application or website and social media [tele-research cohort (TRC)]. Data collection comprised baseline demographic and clinical variables, encompassing symptoms, organ involvement, diagnostic tests results and medication use. Results The study included 120 IIM patients, 82 in the TRC and 38 in the CBC. The average age was 55 ± 13.4, 75% females and 81% Caucasians. Both cohorts exhibited similar demographic characteristics. Overall, 41% dermatomyositis, 27% polymyositis, 23% anti-synthetase syndrome, and 9% necrotizing myositis patients were enrolled, with comparable subtypes prevalence among cohorts (P = 0.85). The groups demonstrated similarities in multiple clinical factors, including muscle enzymes, diagnostic delay, employment status, various patient and physician-reported outcomes, functional tests, and the frequency of abnormal findings in chest CT, pulmonary function tests and electromyography. TRC patients received biologics and csDMARDs more frequently (P < 0.001 and P = 0.013, respectively). Conclusion Tele-research recruitment yielded a patient cohort resembling traditionally recruited patients demographically and clinically, indicating its effectiveness for robust and diverse patient recruitment in clinical studies. pubtype: Academic Journal doctype: pictorial research tables/charts Journal Article ougenre: Article language: English refInfo: holdings: @attributes: islocal: N |
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