Multiple sclerosis (MS) is a neurological disease that affects about 1 million people in the United States.
Your brain contains a type of cell called a neuron, and neurons are coated in a layer of insulation called a myelin sheath. If you have MS, your immune system begins to mistakenly attack these healthy myelin sheaths. This interferes with the ability of your central nervous system to function properly and can lead to a number of neurological, physical, and emotional symptoms.
There’s no known cure for MS. There is also no single, definitive cause. Current knowledge suggests there are many risk factors for developing MS, including your genes as well as environmental triggers.
Research into the causes and treatments for MS is ongoing, but it suffers from a lack of diversity. Let’s take a look at why diversity in MS research and clinical trials matters, who is most affected, and what can be done about it.
MS has historically been viewed as a condition that primarily affects white people, especially those living in North America or Northern Europe. Increasing evidence to the contrary is challenging this idea, however.
Although it’s older, a widely cited 2012 study of the medical records of veterans who served between 1990 and 2007 showed that Black service members had the highest incidence of MS. More recent research shows that MS mortality rates in those under the age of 55 are highest among Black people.
Research suggests that MS may affect people of different races and ethnicities differently. These differences may affect how people respond to MS treatments.
For this reason, it’s important to include people of diverse backgrounds in clinical trials for MS treatments. Understanding how medications affect people of different races and ethnicities can help doctors make treatment decisions and improve outcomes for people with MS.
Despite this, there’s a lack of diversity within MS research, and many people remain underrepresented. For example, ublituximab (Briumvi) was the only novel therapy approved to treat MS in the United States in 2022. According to a report by the
A 2022 review of 44 phase 3 clinical trials of disease-modifying therapies for MS found that:
- 37.8% didn’t report race or ethnicity
- 31.1% reported white participants only
- 31.1% reported two or more races or ethnicities
Even though the majority of MS research participants are white, a 2023 review of studies notes that people with MS of non-white ethnicity may have more severe symptoms, more rapid disease progression, and respond less to standard treatments. This demonstrates that more diversity in MS research is needed in order to achieve equitable healthcare.
Many interconnected factors, such as genetic, environmental, and socioeconomic factors, can determine an individual’s risk of developing MS, disease progression, and treatment outcomes. These factors are often negatively impacted for people in minority or underrepresented groups.
Factors such as lack of access to healthcare may play a role, for instance. Not all communities share the same access to healthcare for a variety of reasons, some of which include:
- inability to take time off work
- lack of access to transportation
- inadequate health insurance
- stigma or discrimination from healthcare providers
These challenges don’t affect MS outcomes in isolation. They can also increase the likelihood and severity of other health complications such as high blood pressure or diabetes, which in turn could make it more challenging to manage MS. They might also increase a person’s risk of developing MS, especially given the exact causes of MS remain unknown.
Improving diversity in MS research will require change at both the individual and institutional levels.
Enrolling more diverse participation in clinical trials would be one way to improve the amount of data available for making research decisions. This is easier said than done. Clinical trials will need to be more accessible, and doctors will need to encourage more trial participation. People with MS will also need to be better informed about the trials available to them.
Additionally, the Consortium of Multiple Sclerosis Centers recommended in 2023 that efforts need to be made to improve diversity among people who work in neuroscience. People working in MS research who are themselves from underrepresented groups are best able and most likely to find solutions for diversifying MS research participation.
Clinical trials are an important tool for gathering data about a disease’s causes, progression, and treatments. The data becomes more robust and useful as more people — and a greater diversity of people — participate in the trial.
If you have MS, you may be interested in participating in a clinical trial.
The National Library of Medicine maintains a helpful resource for finding active clinical trials. Trials included in this database may be federally sponsored or privately funded. They could be based in the United States or other countries. The search tool allows you to find trials suited to your needs.
Participating in a clinical trial does not guarantee a particular outcome and may be associated with increased risks. Your doctor can help provide more information about which clinical trials might be a good fit for your unique circumstances and treatment goals.
Multiple sclerosis is a significant contributor to neurological disability in the United States.
Many groups of people are underrepresented in clinical trials, both as participants and as researchers. This can lead to detection and treatment methods that provide substandard care for people in these groups.
More diversity within clinical trial participants and researchers will help improve outcomes for all people with MS.