Barriers to clinical trial access among Black lupus patients

Summary: Abstract Body: The purpose of this study was to uncover the most prominent barriers affecting clinical trial access among Black lupus patients in the Philadelphia area. Although Black patients comprise 41% of estimated lupus patients in the US, they make up only 14% of clinical trial enrollees. UPenn has partnered with Lupus Therapeutics in Project CHANGE, a community-based research approach that aims to address challenges that Black lupus patients encounter when accessing clinical trials. We assessed trial access barriers using a REDCap survey accessed via link or QR code. Questions assessed trial knowledge, interest in joining a trial, and barriers affecting participation. Key barriers assessed were transportation difficulties, issues with work leave, distrust, and lack of knowledge. Free response sections evaluated the presence of other barriers and how trial access could be improved. Unique survey QR codes tracked which environments participants were engaging in the survey including social media, community events, support groups, and clinics. 51 patients were included with 30 from clinic, 15 from community events, 5 from support groups, and 1 from social media. 33% had a small interest in joining a trial, 22% were very interested in joining a trial, 22% were unsure due to lack of knowledge, and 8% were not interested at all. For the biggest barrier to joining a trial, 39% said lack of knowledge, 24% said travel difficulties, 16% said no issue, 10% said issues with work leave, and 4% said distrust. 53% had never been approached about a trial before and 78% felt comfortable speaking to their doctor about trials. In free response sections, participants expressed concerns around placebo medications and suggested improvements in transparency, awareness, and financial assistance. Though barriers to trial access are multi-factorial, targeting education and transportation may be helpful in future endeavors to increase trial participation of Black lupus patients in the future. Shae Chambers^{1, 2}, Alannah Hill^{1, 2}, Aretha On^{1, 2}, X. Yang^{1, 2}, Lais Lopes Almeida Gomes^{1, 2}, Touraj Khosravi-Hafshejani^{1, 2}, H. Ali^{1, 2}, Taylor Adjei³, Victoria Werth^{1, 2} 1. Dermatology, University of Pennsylvania, Philadelphia, PA, United States. 2. CMCVAMC, Philadelphia, PA, United States. 3. Lupus Therapeutics, New York, NY, United States. Minoritized Populations and Health Disparities Research