Research Event Focuses on Importance of Diversity in Lupus Clinical Studies
by LFA Research Team
On October 15th and 16th The Lupus Foundation of America helped to sponsor and participated in The Lupus 21st Century Conference, “Increasing Ancestral Diversity of SLE in Clinical Studies: Overcoming the Barriers”.
The ultimate goal of the meeting was to improve lupus clinical trials so we can find better treatments and one day a cure that would be available to everyone diagnosed with lupus. It is important for all populations to participate in clinical trials, however, people of non-European ancestries, who have the highest prevalence of lupus and burden of disease, are much less likely to participate in clinical trials.
During the meeting, people living with lupus, healthcare providers, pharmaceutical company representatives, clinical trialists,, lupus advocacy organizations and researchers united and discussed the challenges of education, recruitment and participation of individuals of diverse ancestries into lupus clinical trials and research. The meeting was highly interactive. One of the unique and central aspects of the conference was that it provided people living with lupus with a forum to share experiences and discuss the challenges they face in considering and participating in lupus clinical trials.
Other important topics during the event included how lupus appears to differ genetically in people of varied ancestral backgrounds and why cultural competence is critical to increasing participation of diverse populations in lupus studies.
Throughout the conference, several physician investigators and patient advocacy organizations also discussed ongoing efforts to increase minority participation in lupus clinical trials. Dr. Laura Schanberg, pediatric rheumatologist at Duke University, who led a large and successfully-enrolled pediatric lupus trial (APPLE) shared that investigators need to be vigilant and ask all eligible patients to participate in clinical studies. Simply asking patients if they want to participate in a clinical trial is very important.
Trish Davidson of the Lupus Foundation of America gave an update on the IMPACT project, a faith-based approach to increasing awareness and participation in lupus clinical trials. The project has a Community Advisor Board that helped develop training materials on participation in lupus clinical trials. Trish concluded her update by emphasizing that communities and researchers should continue to work together to increase minority involvement in research.
Overall, the meeting provided a platform in which members of the research community and people with lupus could engage and develop solutions, aimed at increasing the involvement of people of many different ancestral backgrounds in lupus clinical trials. A manuscript will be developed that will provide a set of recommendations and action steps to continue the effort to increase ancestral diversity in lupus clinical trials.