Truth be told, most of the advances that we make in medicine are tied to research. For example, finding life-saving treatments for cancer or the best medicine for thyroid disease is all based on research and proven results. But diversity and inclusion in research is lacking.
So what does this have to do with Multiple Sclerosis (MS)? And why does any of this matter to me? I’ll give you three reasons:
- There has been a drastic increase in MS diagnosis in diverse populations over the last decade.
- Though prevalence of MS is higher in Europeans, the outcomes are potentially worse in some ethnic minority groups, including African Americans.
- Though 10-30% of the United States MS population is African-American, there is <5% African-American enrollment in clinical trials.
There is very little research on MS in diverse communities in comparison to other populations. As clinicians and researchers, we must be intentional in making sure that the populations we study and research reflect the type of patients that we see. In order for science to truly progress toward more effective prevention and treatments for diverse communities, we all have to be a part of the solution.
There are various types of research. Clinical trials are larger research studies that enroll people with similar characteristics and give them the same level of care so we can measure outcomes. There are also Registries which collect information to understand risk and trends in care as well as interventional studies that may assess the effects of diet and exercise on a medical condition.
Objections to Research
Of course, I understand the hesitation to participate in research. Historically, in minority communities, there have been many injustices, which have led to mistrust.
But, things have changed. Research trial protocols are rigorously reviewed to ensure that human rights are not violated and that all work done is ethical.
As scientific knowledge continues to evolve, the medical community is constantly looking for better ways to manage medical conditions. We want to move toward finding ways to determine the best treatment for an individual. The ultimate goal is personalized medicine – a treatment paradigm that gives clinicians the ability to pick a treatment based on a person’s individual make-up.
How can you get involved? Ask your doctor about research opportunities and check reputable websites of charitable MS organizations.
To learn more about MS, follow me along this journey of MS and neurology education so that you can be empowered and educated about your disease and become an active part of your healthcare team. To learn more, subscribe to my newsletter HERE and follow me on all social media at Dr. Mitzi Joi MD.