April 21, 2022

The Lupus Research Alliance is proud to share new results published in the prestigious Journal of Clinical Rheumatology from the data collected for the Lupus Patient-Focused Drug Development (PFDD) Initiative that will add to our understanding of who participates in clinical trials and why. This analysis will help inform development of programs and initiatives to increase diversity of lupus trial participants and ensure the population testing potential treatments reflects the real-world population of people living with lupus.

Data showed that people who were Black were more likely to participate in clinical trials than those who were White or Hispanic. The two most common reasons for this group to participate were their personal desire to advance lupus research and having been invited by their physician. Contributing to the overall understanding of what motivates people of color to join clinical trials, these results can help guide the design of trials that foster increased diversity.

Lead author Dr. Onengiya Harry and co-authors Drs. Carl Langefeld, Lori Crosby and Avani Modi concluded that the results from this study and prior research suggests that the rate of participation in clinical trials among historically underrepresented minorities may be increased “by aligning with individuals’ desire to advance science, optimizing physician recommendation, and reducing/addressing barriers described in prior studies (i.e., lack of culturally appropriate information aids, mistrust in medical research, poor understanding of clinical trials, transportation challenges, and timing issues).”

Results from this study confirmed what we know about our patients living with lupus, they want to help make things better for others diagnosed with lupus,” noted Dr. Harry. “This is highlighted by the high number of patients with lupus who participated in trials ‘just to help’. As providers who care for them, recognizing that we can make them more comfortable with that decision is important. Recruitment strategies that incorporate both these factors would account for most of the reasons while those living with lupus participate in clinical trial.”

The Lupus Research Alliance, in collaboration with the Lupus and Allied Diseases Association and the Lupus Foundation of America collected data for the PFDD Initiative to help the Food and Drug Administration to better understand the perspectives and experiences of people with lupus and advance treatments for this devastating disease. The Lupus: Patient Voices Report presented top line findings from the PFDD. This additional analysis of the data published by Dr. Harry was funded by a special grant from the Lupus Research Alliance.