Engaging all types of people for research isn’t just a nice thought. It is critical to obtaining research results that will be meaningful. Middle-aged white women are often the people who volunteer for studies. Men, young people, and most significantly, people of color, lack representation in studies.
According to the U.S. Food and Drug Administration, “Overall, few people actually sign up for and participate in trials, and those who do participate don’t always represent the U.S. population. Participation is especially low for certain populations, including adults age 75 or older and people from certain racial and ethnic groups.”
According to Hollie Schmidt, vice president of scientific operations at the Accelerated Cure Project (ACP) for multiple sclerosis, the project has received an engagement award from the Patient-Centered Outcomes Research Institute to address the issue of underrepresentation of minority groups in MS research.
“With this funding, we formed the MS Minority Research Engagement Partnership Network with a number of other individuals and organizations including Anita Williams and Shawn Feliciano, who are the group’s MS advisors,” Schmidt said.
Williams and Feliciano also participate in iConquerMS, a patient-led research network for which I am a lead patient representative.
This study was a priority, according to Williams, because “as we learn more about multiple sclerosis, it has become apparent that People of Color (POC) are affected at higher rates than previously believed. This fact means it is imperative for the research community to make diversity a priority when populating research and clinical trials.”
Schmidt added, “At Accelerated Cure Project, we have seen an imbalance in enrollment into iConquerMS. Although we don’t know the exact proportion of racial and ethnic groups in MS, it seems clear that we’ve had more success recruiting non-Hispanic Caucasians than other groups. This is a problem because it means our research results won’t apply to everyone equally, and therefore won’t benefit everyone equally. This is also a problem for clinical trials and any type of study that could lead to new breakthroughs for people with MS. We won’t know how well those breakthroughs can benefit different groups of people with MS if the studies don’t include those groups.”
