POS1209 INTERNET-BASED ENROLLMENT OF A MYOSITIS PATIENT COHORT

• Published in: Annals of the rheumatic diseases Vol. 82; no. Suppl 1; p. 938
• Main Authors: Lomanto Silva, R., Moghadam-Kia, S., Keret, S., Oddis, C. V., Aggarwal, R.
• Format: Journal Article
• Language: English
• Published: Kidlington BMJ Publishing Group Ltd and European League Against Rheumatism 01.06.2023; Elsevier B.V; Elsevier Limited
• Subjects: Autoantibodies; Biopsy; Dermatomyositis; Diagnosis; Enrollments; Feasibility studies; Inflammatory diseases; Musculoskeletal diseases; Myositis; Patients; Polymyositis; Population studies; Recruitment; Scientific Abstracts; Social networks; Telemedicine; United States > US; Telemedicine; Myositis
• ISSN: 0003-4967; 1468-2060
• DOI: 10.1136/annrheumdis-2023-eular.2880

BackgroundRecruitment for myositis clinical research is challenging, due to the rarity of the disease and geographic considerations. Remote enrollment using digital health technologies, social media, and tele-medicine provide researchers with more optimal recruitment options. (1)ObjectivesTo assess the effectiveness of various remote recruitment strategies in myositis patients.Methods“Myositis Patient Centered Tele-Research” (MyPacer) is an NIH-funded multi-center observational study assessing the feasibility, efficiency and acceptability of virtual research in myositis. Subjects were recruited from anywhere in the United States (U.S.) via online strategies: a) Patient organizations (e.g. The Myositis Association [TMA], Myositis Support and Understanding [MSU], etc.) posted a study link on their website, emailed members, and posted on social media; b) Targeted advertisements were posted on Google, Facebook and Twitter; c) Myositis physicians were emailed with a request to refer patients. Interested subjects reviewed study details, e-consented and enrolled via the study mobile application (app) or website. Adult patients who fulfilled self-reported eligibility criteria were enrolled (after physician verification of polymyositis [PM], necrotizing myositis [NM], or dermatomyositis [DM] and fulfillment of at least 4/6 disease criteria for PM/NM, or 3/6 for DM). Disease criteria included: muscle weakness, elevated CK, compatible EMG or biopsy (muscle or skin), DM rash, or a positive myositis associated auto-antibody. The diagnosis and disease criteria were confirmed by a physician via chart review.ResultsIn 6 months, 94 participants were enrolled [71 (75.5%) females, median age of 54 years (SD +/- 13.9), and 76 (80.9%) White, 9 (9.6%) Black, and 3 (3.2%) Asian]. The most common diagnosis was DM (46, 48.9%), then PM (35, 36.2%), NM (7, 7.5%), and unspecified myositis (6, 6.4%). Primary myositis doctors were rheumatologists (80, 85.1%), neurologists (10, 10.6%), or dermatologists (2, 2.1%). We enrolled subjects from 30 states and 5 regions in the U.S., with higher participation from Virginia (n=13; 13.8%), Pennsylvania (n=11; 11.7%), Florida (n=8;8.5%), and California (n=7; 7.4%). Among the main recruitment sources, TMA was responsible for 63 (67%) participants, MSU for 20 (21.3%), and doctor referral for 9 (9.6%). Other recruitment sources (n=53; 56.4%) included 18 (19.1%) via Facebook, 6 (6.4%) via study website, 2 (2.1%) via Twitter, and 1 (1%) via Google advertisements. Participants recruited via Facebook were younger than those recruited via email (mean ages 47.39, SD +/- 10.66 and 56.59, SD +/- 13.63 respectively; 95% CI 2.15-16.25; p=0.01). For enrollment method, 62 (66%) individuals used the study app, and 32 (34%) used the study website. The app was the preferred method throughout the country, except in the Southeast where 51.7% of participants used the study website. The mean age of app and website users was 51.79 (SD +/- 12.43) and 60.12 (SD +/- 14.23) years, respectively (95% CI 2.68-13.98; p=0.004).ConclusionOnline recruitment is a viable alternative for maximizing potential recruitment in myositis clinical studies. We remotely enrolled patients from every region in the U.S. Patient support organizations were very successful in augmenting recruitment. Moreover, Facebook was responsible for almost 20% of participants, especially within the younger (ages 30 to 66) population. Our study app appeared quite functional with 66% use of the enrolled subjects and a clear favorite in younger individuals compared to website use. We hope these findings will guide future online myositis studies and advance clinical research.Figure 1.Reference[1]Akers L, Gordon JS. Using Facebook for Large-Scale Online Randomized Clinical Trial Recruitment: Effective Advertising Strategies. J Med Internet Res. 2018 Nov 8;20(11):e290. doi: 10.2196/jmir.9372. PMID: 30409765Acknowledgements:NIL.Disclosure of InterestsRaisa Lomanto Silva: None declared, Siamak Moghadam-Kia: None declared, Shiri Keret: None declared, Chester V Oddis: None declared, Rohit Aggarwal Consultant of: Mallinckrodt, Octapharma, CSL Behring, Bristol.Myers-Squibb, EMD Serono, Q32, Kezar, Pfizer, AstraZeneca, Alexion, Argenx, Boehringer Ingelheim (BI), Corbus, Janssen, Kyverna, Roivant, Merck, Galapagos, Actigraph, Scipher, Horizon Therapeutics, Teva, Beigene, ANI Pharmaceuticals, Biogen, Nuvig, Capella Bioscience, CabalettaBio., Grant/research support from: Mallinckrodt, Pfizer, Bristol Myers-Squibb, Q32, EMD Serono, Janssen, Boehringer Ingelheim (BI)