The MS Minority Research Engagement Partnership Network is calling for all multiple sclerosis (MS) patients, ages 21 and older, to respond to a 15-minute online survey. Investigators are hoping 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, an autoimmune disorder of the central nervous system characterized by inflammatory demyelination and neurodegeneration, affects some 400,000 people across the United States and over 2 million people worldwide. These people represent a vast variety of ethnic and racial groups, but minorities are consistently underrepresented in clinical trials — even though studies have shown that MS may have a greater impact on minority groups than previously thought.
Minority populations in the United States, such as African-Americans and Hispanic Americans, are known to a higher incidence of MS compared with people in their ancestral countries, and the disease is thought be particularly aggressive in blacks. But because fewer blacks and Hispanics participate in clinical trials, data is limited on the effectiveness of treatments, or best approaches to treatment, in these patient groups.
The MS Minority Research Engagement Partnership Network was established to define and address the issue of racial/ethnic minority underrepresentation in MS research.
The Network is spearheaded by the Accelerated Cure Project, a patient-founded, nonprofit organization that focuses on meeting both the research needs and interests of people with MS and those of the research community.
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 it to implement strategies to overcome these barriers.
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 through this initiative may also help increase minority research engagement in other diseases.
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: [email protected].
Funding for this project is provided by a Eugene Washington PCORI Engagement Award made by the Patient-Centered Outcomes Research Institute (PCORI).