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...

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Publicado en:Rheumatology Vol. 64; no. 8; pp. 4687 - 4695
Autores principales: 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
Formato: pictorial research tables/charts Journal Article
Publicado: Oxford University Press / USA Aug2025
Acceso en línea:Ver este registro en EBSCOhost
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      dt: Aug2025
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      pub: Oxford University Press / USA
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        10.1093/rheumatology/keaf217
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        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
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