Recruitment rate comparison between a virtual tele-research cohort and a traditional centre-based cohort in idiopathic inflammatory myopathy
Year: 2025
Type: article
Study design: Observational Study
Abstract: 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.
Source: Lara D. Veeken
Authors: Siamak Moghadam-Kia, Anushka Aggarwal, Swamy Venuturupalli, Shiri Keret, Nantakarn Pongtarakulpanit, Mark Riley, Shalini Mahajan, Daphne Scaramangas-Plumley, Aarat Patel, Joe Kelley, Eleni Tiniakou, Chester V Oddis, Rohit Aggarwal, MyPacer Study Group, Keith Schenberger, Douglas White, Micheal Leone, Teerin Liewluck, Edward Skol, Donald Martin, Carl Henderson, Jack Vine, Ronald Bell, Sheryl Cowan, Marc Quinn, Jonathan D Leffert, Matlock Jefferies (Dianne Cooper), Surabhi Khanna, Nishant Gupta, Lana King, Raphael Kieval, Kenneth Crager, Helene Kramer, Dennis Ozment, Jeffrey Callen, Joe Kelley, Heather Larabee, Jeremy Murdock, Sandra Elizabeth Bendick, Sarah L Shen, Anderson -WIlliams, Janet Kim, Hayri Sangiray, Victor Chen, Louis Flaspohler, Victoria Werth, Jemima Albayda, Joshua Sundhar, Qaiser Rehman, Joseph Shanahan, Georgia Seely, Yadira Velazquez-Rodriguez, Sheetal Shroff, Christine Chhakchhuak, Jemima Albayda, Emilia Dulgheru, Ernest Hoffman, Shazia Beg, Daniel Jacobs, James Curran, Laurie Mathie, Michael (Emil) Thelen, Eleni Tiniakou, Merrideth Morris, Kristin D'Silva, Rory Marks, Brent Culver, Ho Bing Oei, Sharon Nations, Sarah Coleman, Brittany Adler, Carrie Richardson, M Porter Meadors, Wai Lee, Sou-Pan Wu, Christopher Wright, Luiziana Manuela Marinescu, Prahlad Reddy, Shibu Skaria, Judy Huang, Sandra Chesoni, Marcela Perez, Naveed Sami, Rudy Greene, Ruba Barakat Kado/Elena Schiopu, Kenneth Crager, Eric Slavin, Robert Kalish, Maya Estephan, Tina Shah, Jessica Baer Mears, Glenn Douglas, Kara Liane Steijlen, Kanchana Herath, Vernon Berglund, Charles Mills, Timothy Gensler, James Wilson, Kam Newman, Leo Wang, Chere McCormick, Jerrica Farias APRN, William McCune, Angela Gierut, Julie Paik, Joseph Enama, Anna Popazoglou, Ghaith Nosiseh
Institutions: University of Pittsburgh, University of Pittsburgh Medical Center, Indraprastha Apollo Hospitals, Cedars-Sinai Medical Center, Technion – Israel Institute of Technology, Bnai Zion Medical Center, Mahidol University, Ramathibodi Hospital, University of Virginia, Johns Hopkins University
Language: English
Subfield: Epidemiology
Field: Medicine
Domain: Health Sciences
Open Access status: green
Awards: G2938822220, G3368969977
OpenAlex ID: W4409711016