In a new study published in Lupus Science & Medicine, researchers assessed clinical trial perceptions among a predominantly Black cohort of participants with systemic lupus erythematosus (SLE).
Researchers surveyed 767 participants from the GOAL cohort, the largest predominantly Black lupus cohort in the United States. Of the participants, 80% self-identified as Black and 94% were female. The survey included eight questions assessing clinical trial knowledge, prior experience with clinical trial recruitment/participation, willingness to participate in clinical trials in the future, the association of race and gender with participation, and the importance of clinical trials targeting their specific race or gender. The survey also explored concerns about trust in medical research and fears of being treated as a “guinea pig,” which have historically impacted Black participation in clinical trials.
The survey revealed that only about 30% of respondents expressed willingness to participate in lupus clinical trials, with similar levels of willingness observed among both Black and non-Black participants (28% vs. 31%). However, Black respondents were significantly less likely to understand the definition of a clinical trial (34% vs. 70%), indicating the need for educational campaigns on clinical trials to target this group. Additionally, Black respondents were more willing to participate in lupus clinical trials if the enrollment was targeting their racial or gender group, or if the study staff were of the same race or gender. Notably, Black men were significantly more willing to participate in clinical trials than Black women, highlighting gender differences in trial perceptions.
The study also identified key barriers to participation, including distrust in the medical system, lack of awareness about clinical trials, and concerns about being exploited. Lastly, disease activity and related factors, along with social determinants of health are associated with willingness to participate in trials. Among Black respondents, willingness to participate in clinical trials was associated with being male, unemployed or disabled, having governmental health insurance, and experiencing higher disease activity.
More research is needed to evaluate whether clinical trial education, increased racial and gender diversity among trial staff, and race and gender-specific trials can effectively increase the number of Black participants in clinical trials. Efforts to build trust, improve trial awareness, and address structural barriers to participation should also be explored.
The Lupus Foundation of America is committed to advancing lupus research, improving clinical trial education, and addressing health disparities through initiatives like the Research Accelerated by You (RAY®) registry. The RAY registry empowers individuals living with lupus and their caregivers to contribute their experiences and use their voice to advance lupus research and improve clinical trial design and education. This effort is part of LFA’s broader mission, which also includes the Increase Minority Participation and Awareness in Clinical Trials (IMPACT+) for Lupus program. More information on these initiatives and LFA’s commitment to equitable lupus research can be found here.
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