Clinical trials have long been the cornerstone of medical advancement, but their impact is especially meaningful when they represent the full diversity of the populations they aim to serve. During a recent panel discussion on Clinical Trials Day, industry leaders shared powerful examples of both interventional and observational studies that have made significant differences in healthcare outcomes, particularly for Black Americans.
Moderna’s COVID-19 Vaccine Trial: A Commitment to Representation
When Moderna launched its pivotal COVID-19 vaccine trial, the company made an unprecedented decision to prioritize diversity in its study population. As Nader Daoud, Associate Director of Clinical Trial Health Equity at Moderna, explained, “When we were running the trial… we saw that we had an imbalance in the number of participants of color, particularly Black, Hispanic participants.”
Rather than proceeding with an unrepresentative sample, Moderna took a bold stance. “The company realized that we would have to extend the timeline in order to allow, to actually encourage people of color to be more enrolled in the trial,” Daoud shared. This meant “working closely with our community partners, with investigators of color, with sites that actually had these populations.”
The decision wasn’t made lightly, as it delayed the vaccine’s market entry. However, the results spoke for themselves—Moderna achieved approximately 37-38% enrollment of people of color, closely mirroring the U.S. population demographics.
“It took longer for our vaccine to come to market, but we managed to enroll with thirty-seven, thirty-eight percent people of color in the U.S., which is representative of around 40% people of color that are living in the U.S. across generations,” Daoud noted.
Groundbreaking Genetic Discoveries in Parkinson’s Research
Observational studies are equally vital to advancing healthcare equity. Alyssa O’Grady, Vice President of Clinical Research for the Michael J. Fox Foundation for Parkinson’s Research, highlighted a remarkable discovery from 2023.
“The Global Parkinson’s Genetics Program… discovered a new genetic change in people with Parkinson’s of African ancestry,” O’Grady explained. “People with this genetic change were found to be at a higher risk for developing Parkinson’s disease.”
This finding was particularly significant because “prior to the launch of this genetics program that led to this discovery, over 90% of all studies of Parkinson’s genetics were focused on people of European ancestry.” The discovery demonstrates the critical importance of diverse representation in medical research.
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“This was a really powerful example of how much more we can learn about disease when we include folks from all communities in research,” O’Grady emphasized.
The Power of Intentional Inclusion
A common theme across all successful clinical trials was intentionality. As Rolondo Enoch, MS, Director and Head of Diversity and Inclusion in Clinical Trials at Kite Pharma, succinctly put it, “Inclusive science is good science.”
This perspective has transformed how companies approach their research. Daoud noted that at Moderna, “It’s really about making an intentional effort to think about, okay. We did this once, but how do we do it again and again and again?”
For the Michael J. Fox Foundation, setting clear intentions was crucial. O’Grady explained their approach as “setting that intention, putting money behind funding research across the globe to make sure that we have significant numbers of people across all communities participating in research.”
Personal Impact
Ricki Fairley shared her personal experience with clinical trials: “I would be dead if I didn’t have a trial. I had triple-negative breast cancer. I did all of the standard of care stuff. I had a mastectomy, and my cancer came back in a year. And my doctor said, “You have two years to live. We don’t have anything for you.”
Fairley found and advocated for herself to join a clinical trial, taking a drug that is now the standard of care for triple-negative breast cancer. “Not only is it important to do all the right science, but it also can save your life,” she emphasized.
As these examples demonstrate, when clinical trials are conducted with intentional diversity and inclusion, they not only advance scientific knowledge but also directly improve health outcomes for communities that have historically been underrepresented in medical research.
