The Need to Engage Minorities in MS research
Multiple sclerosis (MS) is an unpredictable, potentially disabling disease of the central nervous system. Although it has long been viewed as a disease of white women of northern European ancestry, MS also affects Black, Latino, and Hispanic Americans.
In fact, recent data suggest MS might be more common among these populations than previously believed. But it’s difficult to be sure unless more minority patients are included in MS research.
At Clinical Research Pathways, much of our work focuses on increasing diversity in clinical trials. Since March is Multiple Sclerosis Awareness Month, we are shining a spotlight on this disease and the need to increase minority participation in MS research. If we understand how the disease affects people of different races and ethnicities, we can develop treatments that work better for all MS patients.
Disparities in MS trials and treatments
Some studies have found that Black Americans with MS tend to:
- Have more serious symptoms and develop more aggressive forms of the disease.
- Experience more relapses.
- Experience greater disability starting at younger ages.
Latino and Hispanic Americans with MS tend to:
- Develop the disease at younger ages.
- Be more likely to get spinal cord lesions that could increase pain and impairment.
- Experience optic nerve damage and resulting vision loss.
Black and Hispanic Americans also face obstacles to treatment. One study found that these patients are less likely than white patients to receive care for conditions, including MS, in a neurologist’s office. Without this care, many minority patients end up in hospital emergency departments with more serious problems.
What you can do
Patients with MS or family members of patients: Choose a neurologist that you trust to address your concerns and help oversee your care. Ask him or her about the latest treatment options and about participating in appropriate clinical trials.
Healthcare providers, researchers, patient advocacy organizations, and other members of the MS community: Learn more about the MS Minority Research Engagement Partnership Network and take advantage of its engagement resources and toolkits.
