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Published in:
26-08-2024 | ORIGINAL ARTICLE
Internet-based enrollment of a myositis patient cohort—a national experience
Authors: Raisa Lomanto Silva, Shiri Keret, Tanya Chandra, Akanksha Sharma, Nantakarn Pongtarakulpanit, Siamak Moghadam-Kia, Chester V. Oddis, Rohit Aggarwal
Published in: Clinical Rheumatology | Issue 10/2024
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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.
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Key Points
• In this study, we demonstrate the high rate of recruitment for an idiopathic inflammatory myopathy (IIM) cohort through remote and online methods.
• Patient-support organizations were successful partners in reaching and recruiting IIM participants.
• Online recruitment is viable and may be a pathway to gather participants from a wider geographical area when compared to traditional recruitment.
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