UCLA neurologist aims for greater diversity in clinical trials
A 'staggeringly small number' of Black patients take part in Parkinson's studies
A neurologist and movement disorders specialist at the University of California, Los Angeles (UCLA), is working to develop a way to help Parkinson’s disease researchers better assess and recruit Black patients into clinical studies.
If successful, the tool planned by Jennifer Adrissi could be adapted for use in Latino and other minority populations, and with Alzheimer’s disease or other conditions. For now, Adrissi is focusing on Black people with Parkinson’s, who make up 13.6% of the U.S. population but are 1.7% of participants in the trials necessary for new treatments and a better disease understanding.
“That’s a staggeringly small number,” Adrissi, MD, an assistant professor-in-residence of neurology at UCLA’s David Geffen School of Medicine, said in a press release.
“Black people with PD [Parkinson’s disease] are not only underrepresented in clinical trials — they are also more likely to be diagnosed at a later stage, and less likely to receive appropriate treatment,” she added. “As a movement disorders neurologist, I know that this results in a lot of unnecessary suffering. My research is focused on trying to move the dial toward more equity in the field.”
Working with local community to advance Parkinson’s clinical trials
A recent UCLA Faculty Career Development Award will support Adrissi’s development of an assessment scale aimed at diverse patient recruitment in Parkinson’s clinical trials. The awards, administered by the UCLA Equity, Diversity, and Inclusion unit, range from $5,000 to $15,000 to support research project advancement.
“Most PD researchers really want to recruit a diverse group of participants for their study, but many don’t know how,” Adrissi said.
The tool will include a number of questions about factors known to influence the probability that a Black person will sign up for a clinical trial, like the study’s location, according to the press release. If a trial is exclusively offered at a single academic institution or large hospital, that answer would be flagged as a prospective obstacle. Recommendations would be provided, such as expanding the trial to clinics based in a community or, if possible, adding a virtual component.
Adrissi will use a study design that involves partnering with the Black community to learn more about how Parkinson’s affects them and in finding ways to address disparities in scientific research. “I always say that my approach is at the intersection of outreach and research,” said Adrissi.
Adrissi now is recruiting an advisory council comprised of Black patients, their family members or care partners, and community leaders from across the greater Los Angeles area.
Once formed, the council will be consulted at each stage of the tool’s development, from identifying key barriers to assess, to designing and validating the tool. The entire process is expected to take about a year and a half.
“Sometimes we develop things inside our academic bubbles, and then they don’t work very well in real life,” Adrissi said. “I think that partnering with the community from the outset will make this research more meaningful and accurate.”