Feb 12, 2025 Story by Publisher
A recent study published in Lupus Science & Medicine examined perceptions of clinical trials among a predominantly Black group of individuals diagnosed with systemic lupus erythematosus (SLE).
The research surveyed 767 participants from the GOAL cohort, the largest primarily Black lupus cohort in the U.S. Among them, 80% identified as Black, and 94% were women.
The survey included eight questions assessing their understanding of clinical trials, past recruitment or participation experiences, future willingness to enroll, and the impact of race and gender on participation. It also explored the significance of race- and gender-specific trials, as well as concerns about medical research trust and fears of being treated as a “guinea pig,” issues that have historically influenced Black participation in clinical research.
Findings revealed that only about 30% of participants were open to joining lupus clinical trials, with similar willingness rates among Black and non-Black respondents (28% vs. 31%). However, a significant disparity was noted in the understanding of clinical trials—only 34% of Black participants correctly defined a clinical trial compared to 70% of non-Black participants.
This highlights the need for targeted educational initiatives. Additionally, Black respondents showed greater willingness to enroll if the trial specifically targeted their racial or gender group or if study staff shared their background. Notably, Black men were more inclined to participate in trials than Black women, underscoring gender-related differences in perceptions.
The study also identified key barriers to participation, including distrust in the medical system, limited awareness of clinical trials, and concerns about exploitation. Furthermore, social determinants of health and disease activity were linked to willingness to participate. Among Black respondents, those who were male, unemployed or disabled, covered by government health insurance, or experiencing higher disease activity were more likely to consider clinical trial participation.
Further research is necessary to determine whether increased education, diverse representation among trial staff, and the inclusion of race- and gender-specific trials can enhance Black participation in clinical studies. Efforts to build trust, raise awareness, and address structural barriers should also be prioritized.
The Lupus Foundation of America (LFA) remains dedicated to advancing lupus research, improving clinical trial education, and addressing health disparities through initiatives such as the Research Accelerated by You (RAY®) registry. This registry allows individuals with lupus and their caregivers to contribute their experiences to shape lupus research and clinical trial education. This initiative is part of LFA’s broader mission, which includes the Increase Minority Participation and Awareness in Clinical Trials (IMPACT+) for Lupus program. Source: LUPUS
