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Bringing More Minority MS Patients into Research Is Project's Goal

June 13, 2017

The MS Minority Research Engagement Partnership Network was established to define and address the issue of racial/ethnic minority underrepresentation in multiple sclerosis (MS) research. Investigators hope to better understand how people with MS from different ethnic backgrounds and races view medical research, so as to engage them in clinical trials and other research efforts. MS affects some 400,000 people across the United States and over 2 million people worldwide, representing a vast variety of ethnic and racial groups. However, minorities are consistently underrepresented, even though studies have shown that MS may have a greater impact on minority groups than previously thought. To help with this, the MS Minority Research Engagement Partnership Network is calling to have MS patients, ages 21 and older, to respond to a 15 minute online survey.

Minority populations in the United States, such as African-Americans and Hispanic Americans, are known to have a higher incidence of MS compared with people in their ancestral countries. It is also thought that MS is particularly aggressive in blacks. But fewer blacks and Hispanics participate in clinical trials, making data limited on the effectiveness of treatments or best approaches to treatment in these patient groups. The project’s ultimate aim is to improve MS research through a greater inclusion of all MS communities, and to benefit, in particular, minority communities through greater engagement in research. The insights obtained may also help increase minority research engagement in other diseases.

According to a National MS Society release, survey participants will be asked questions such as: “Have you ever thought about participating in a research study?,” “What do you think is important to study?,” and “What would help you be a part of a study?” After this first goal is reached, and researchers can pinpoint barriers to minority engagement in MS research, the next step is to implement strategies to overcome these barriers.

To participate in the survey, please visit this link: http://tinyurl.com/MSSurvey-NMSS.

More information about this project can be found at www.acceleratedcure.org/ms-minority-research-network.  For questions related to the survey, please email: msminorityresearch@acceleratedcure.org.