Research Affirms Importance of Multi-Ancestry Participation in Lupus Clinical Trials
Systemic lupus erythematosus (SLE) research indicates substantial differences in lupus based on ancestral background. However, enrollment of minority patients in clinical trials, is a significant challenge in lupus research. Barriers include, mistrust, competing demands, lack of access to information, stigma, health insurance coverage and U.S. legal status.
The study, Engaging African ancestry participants in SLE clinical trials, asserts key differences between African ancestry and European ancestry lupus in the following areas: genetics, incidence and prevalence, nephropathy, cardiovascular disease, disease activity and damage accrual, medication response, survival and mortality, and socioeconomic status. This study serves as a call to action to persons with lupus of African ancestry, as well as Asian, Hispanic, American-Indian/Alaskans and other groups, to get involved in trials, and to researchers to take every effort possible to engage ancestries in their research.
In addition to actively informing people living with lupus about the opportunities to participate in research, the Lupus Foundation of America (LFA) maintains and disseminates information for researchers, including resources and tools for lupus education and outreach about lupus clinical trials.
Lupus has been found most prevalent in persons of African ancestry and the Lupus Foundation of America has been working to educate this group about clinical trial participation since 2016. The IMPACT for Lupus model was developed by the Lupus Foundation of America to increase awareness of the lupus clinical trial process and improve engagement between healthcare providers and patients by working through local faith communities. Through the model, health navigators and community ambassadors extend the church’s reach by serving as trusted advocates to help people with lupus make informed decisions about their health needs, including speaking with their physicians about whether a clinical trial is right for them.
The National Resource Center on Lupus can help researchers engage with communities as they design, launch and execute trials. An extensive lupus literature review is also available to researchers to help inform development of interventions that will promote lupus clinical trial participation among ethnic groups.