Recruitment rate comparison between a virtual tele-research cohort and a traditional centre-based cohort in idiopathic inflammatory myopathy.
Objectives Idiopathic inflammatory myopathy (IIM, myositis) faces recruitment and retention challenges in clinical studies due to disease rarity, geographical barriers and logistic difficulties. This study aimed to compare recruitment, enrolment, retention and data completion between a decentralized...
| Publicado en: | Rheumatology Vol. 64; no. 8; pp. 4687 - 4695 |
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| Autores principales: | , , , , , , , , , , , , , |
| Formato: | pictorial research tables/charts Journal Article |
| Publicado: |
Oxford University Press / USA
Aug2025
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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=187954734&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 187954734 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 14620324 DN9 jtl: Rheumatology issn: 14620324 maglogo: N pubinfo: dt: Aug2025 vid: 64 iid: 8 pid: 622 pub: Oxford University Press / USA artinfo: ui: 187954734 187954734 187954734 10.1093/rheumatology/keaf217 187954734 ppf: 4687 ppct: 8 formats: tig: atl: Recruitment rate comparison between a virtual tele-research cohort and a traditional centre-based cohort in idiopathic inflammatory myopathy. aug: au: Moghadam-Kia, Siamak Aggarwal, Anushka Venuturupalli, Swamy Keret, Shiri Pongtarakulpanit, Nantakarn Riley, Mark Mahajan, Shalini Scaramangas-Plumley, Daphne Patel, Aarat Kelley, Joe Tiniakou, Eleni Oddis, Chester V Aggarwal, Rohit Group, MyPacer Study affil: Division of Rheumatology and Clinical Immunology, University of Pittsburgh Medical Center, Pittsburgh, PA, USA sug: subj: Telehealth Myositis Research Subject Recruitment Evaluation Health Services Research Research Subject Retention Evaluation Rare Diseases Human Funding Source Prospective Studies Nonexperimental Studies Patient-Reported Outcomes United States Mobile Applications World Wide Web Questionnaires Geographic Factors Comparative Studies Female Male White Persons Aged Research Dropouts Middle Age Clinical Assessment Tools Audiorecording Videorecording Descriptive Statistics T-Tests Wilcoxon Rank Sum Test Patient Selection Aged: 65+ years Middle Aged: 45-64 years Female Male ab: Objectives Idiopathic inflammatory myopathy (IIM, myositis) faces recruitment and retention challenges in clinical studies due to disease rarity, geographical barriers and logistic difficulties. This study aimed to compare recruitment, enrolment, retention and data completion between a decentralized telemedicine-based research cohort (TRC) and a traditional centre-based cohort (CBC) in IIM. Methods The Myositis Patient Centered Research (MyPacer) study, a large prospective observational study, collected data on core set measures, patient-reported outcomes and functional tests. TRC patients were recruited online across the USA using a mobile app/website, while CBC participants were recruited from two myositis centres. Both cohorts followed the same protocol and were observed for 6 months. Recruitment was defined as participants who completed the pre-eligibility questionnaire, while enrolment referred to those who passed screening and participated for 6 months. Recruitment, enrolment and retention rates were compared between the two cohorts. Results In 6 months, TRC recruited 781 patients, 13 times faster than CBC (n = 60), and enrolled twice as many (P < 0.001). Screening success was similar, 78% for TRC and 87% in the CBC (P = 0.17). Among 120 enrolled, DM was the most common diagnosis (52%), with most participants being female (75%) and White (81%), with a mean age of 55 ± 13.4 years, similar across both cohorts. Dropout rates were similar (TRC, 7.6%: CBC, 5.5%; P = 0.67). TRC had higher compliance with study forms (93%) than CBC (69%) (P < 0.01). Conclusion The decentralized TRC demonstrated higher recruitment and enrolment, with similar compliance and retention rates compared with CBC. Decentralized approaches offer promise for rare diseases with recruitment challenges. pubtype: Academic Journal doctype: pictorial research tables/charts Journal Article ougenre: Article language: English refInfo: holdings: @attributes: islocal: N |
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