Research Recruitment for Minority Individuals with Multiple Sclerosis

About

MS causes significant disability and costs in those affected, but those burdens are not distributed equally. Minority populations including Black and Latinx have worse outcomes in MS than whites. The reasons for these disparities are not well understood but are likely in part due to modifiable factors including delayed diagnosis, disease understanding, poor access to care, and inequities in the medical system. Unfortunately the communities with known disparities are also less likely to participate in MS related research with the most recent MS clinical trials including 97% white participants. Underrepresentation in research reduces our understanding of disparities in MS and reduces our ability to improve outcomes. Recently the MS Minority Research Engagement Partnership Network developed a survey to evaluate research perceptions in people with MS. The survey found higher concerns about risks in minority participants.

The goal of this study is to develop a unique educational intervention including both written materials and a short digital video targeting known barriers to minority participation in research including the needs and benefits of research, concerns about risks, privacy, and perception of lack of benefit. We will then test the effectiveness of the intervention in improving perceptions of research in minorities with MS in a single center randomized trial.