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Lack of Diversity is Hurting MS Studies

September 14, 2016

The importance of getting a representative group of people, also known as subjects, engaged in clinical trials cannot be understated. There is so much that we need to know when it comes to multiple sclerosis, but the picture cannot be complete unless the cohort of subjects includes people from all racial backgrounds to fill in the answers.

The typical volunteer for clinical trials is a middle-aged white women, and getting people of color of either sex to take part in clinical trials is a difficult task. But it is a problem we must find a way to overcome.  A newly released study, “Prognostic factors associated with long-term disability and secondary progression in patients with Multiple Sclerosis,” helps to illustrate why it is important to have every group represented in trials.

This study took place in Brazil, where most of the population is a mix of European and African descent, and the study group could be analyzed for the effect of race in disease progression.  The researchers found the same results that have been indicated in limited studies: Black men often have the worst progression with MS, and how they respond to disease modifying therapy (DMT) can be very different from the response seen in black women and whites.

Obviously all of what has been discovered in the MS community has been because of a study done with mostly white subjects. It is imperative to find ways to engage populations that are underrepresented in clinical trials – and in the case of MS studies, we need to connect with more black women and, especially, black men.  Brazil’s diversity made this study possible because of the large percentage of black people in the general population.