Internet-based enrollment of a myositis patient cohort—a national experience
Issued Date
2024-01-01
Resource Type
ISSN
07703198
eISSN
14349949
Scopus ID
2-s2.0-85202077748
Journal Title
Clinical Rheumatology
Rights Holder(s)
SCOPUS
Bibliographic Citation
Clinical Rheumatology (2024)
Suggested Citation
Silva R.L., Keret S., Chandra T., Sharma A., Pongtarakulpanit N., Moghadam-Kia S., Oddis C.V., Aggarwal R. Internet-based enrollment of a myositis patient cohort—a national experience. Clinical Rheumatology (2024). doi:10.1007/s10067-024-07091-3 Retrieved from: https://repository.li.mahidol.ac.th/handle/20.500.14594/100651
Title
Internet-based enrollment of a myositis patient cohort—a national experience
Corresponding Author(s)
Other Contributor(s)
Abstract
Introduction: Recruitment for idiopathic inflammatory myopathies (IIM) research is a challenge due to the rarity of the disease and the scarcity of specialized myositis centers. Online recruitment may be a feasible alternative to reach rare disease patients. We evaluated various online recruitment methods in a large longitudinal IIM cohort. Methods: The “Myositis Patient Centered Tele-Research” (My Pacer) is a prospective 6-month observational study of IIM, recruited online and through traditional clinic visits. We utilized diverse recruitment methods, such as physician referrals, social media, websites, direct emails, and partnerships with patient-support organizations. Participants self-enrolled and completed pre-screening, e-consenting, and release of medical information via the study-specific app or website. We compared the effectiveness of various recruitment and enrollment methods and the characteristics of the population recruited. Results: A total of 841 participants completed the pre-screening; 408 completed e-consent and registration. From those, 353 (86.5%) were remotely recruited. Email (201; 49.26%) and social media (77; 18.87%) were important recruitment tools. Patient-support organizations were responsible for disseminating the study to 312 (75.46%) participants. The study app was used by 232 (65.72%) individuals for enrollment, with app users being slightly younger than website users (p = 0.001). Participants were mostly female 317 (77.76%), mean age of 54.84 years, White 328 (80.42%), Black 49 (12%), Asian 13 (3.26%), and non-Hispanic 378 (92.65%). Our study reached all U.S. regions and 45 (90%) U.S. states. Conclusions: Social media and partnerships with patient-support organizations lead to a high rate of recruitment, with a wide reach, and a reasonably diverse population.