Inclusive Research in MS

Over the past 25+ years, researchers and clinicians have made significant progress in understanding the science behind multiple sclerosis (MS) and developing new treatments to slow its progression. However, imagine being a person of color and discovering a new medicine that has the potential to make a difference in your life, only to later find out that you weren’t represented in the clinical research that led to the approval of this treatment. That’s how it can feel for minorities who have historically been underrepresented in MS research.

MS affects everyone who is living with it differently. The age of onset, how fast the disease progresses, and the severity of symptoms vary widely from person to person. But minority communities living with MS, including people who identify as Black or of African descent and Hispanic/Latinos, experience more severe symptoms and a faster progression of the disease than their Caucasian counterparts.1 People who identify as Black or of African descent also have twice the risk of MS compared to Caucasians, while people who identify as Hispanic/Latinos have half the risk.2 While the scientific community isn’t certain why such differences exist for minorities living with MS, many researchers point to social disadvantages and disparities in health care as potential factors.

Another reason why the differences in MS in minority groups aren’t well-understood is that these populations are vastly underrepresented in clinical trials. A Food and Drug Administration (FDA) survey of drug trial enrollments showed that people who identify as Black or of African descent and Hispanic/Latinos make up less than 5% and 1%, respectively, of people enrolled in trials.3 The underrepresentation of these groups leads to limited data on the progression of MS, the effectiveness of treatment, and its genetic underpinnings. It also excludes people living with this condition from an opportunity to receive investigational medicines that have the potential to make a difference.

Genentech initiated the first-ever clinical trial that focuses exclusively on broadening our current understanding of MS disease biology among people who identify as Black or of African descent and Hispanic/Latinos living with MS. The Phase IV CHIMES study, or CHaracterization of ocrelizumab In Minorities with multiplE Sclerosis, is currently enrolling participants across the United States.

“Genentech is proud to initiate this inclusive research trial for specific minorities living with MS who may have a different, natural course of disease and who may respond to treatment differently than others,” says Jamie Freedman, M.D., Ph.D., Head of U.S. Medical Affairs. “This new MS trial aims to derive insights on disease progression in order to better tailor care for specific minority populations living with MS. We are committed to addressing health disparities and believe inclusive research can improve outcomes for all people living with this neurological condition.”

The MS study was developed in collaboration with people living with MS, patient advocacy groups, and neurologists with the expectation that the findings will improve current understandings of MS disease biology and treatment response in people who identify as Black or of African descent and Hispanic/Latinos. Deriving better, data-driven insights into the unique nature of MS in these populations may ultimately help healthcare providers offer better treatment options and care.

Hear from Damian Washington who shares his personal experience of living with MS, as well as Dr. Mitzi Joi Williams, a neurologist at Joi Life Wellness MS Center who speaks to the importance of enhancing clinical trial opportunities for minority populations.

Damian Washington reflects on the importance of diverse representation in clinical research and how the community can get involved to ensure their voices are heard.

Dr. Mitzi Joi Williams says improving diversity in clinical trials for MS will help researchers understand why there are differences in how the disease presents itself in people who identify as Black or of African descent and Hispanic/Latinos – and may help “improve the care of the whole MS community.”

With more inclusive clinical trials, our goal is to improve the standard of care to traditionally underrepresented communities, and to improve scientific understanding of diseases by broadening our data to include a diversity of populations, perspectives and experiences. You can read more about Genentech’s actions toward more inclusive research here.