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Regardless of race or ethnicity, people with multiple sclerosis (MS) agree that clinical studies are important and show a willingness and interest in being participants, a primarily U.S. survey found.
Those belonging to minority groups, however, are often deterred from taking part in MS studies for reasons that range from legal and healthcare coverage concerns to mistrust in trial investigators.
Based on these findings, researchers wishing to conduct studies in wide variety of patients are advised to take the time to assure patients that their rights and well-being will always be a priority, and explain the specific measures in place to guarantee those priorities.
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“Researchers can also make their study more attractive to minority groups by highlighting how their study will benefit specific communities. For example, studies of MS treatments could state as an explicit goal the comparison of outcomes in different racial or ethnic groups,” the investigators wrote.
These findings were reported in the study, “Perceptions and Preferences Regarding Multiple Sclerosis Research Among Racial and Ethnic Groups,” published in the International Journal of MS Care.
While MS was once thought to affect mostly whites in the U.S., recent studies found that African-Americans have a higher risk of developing the disorder, and that Hispanic Americans have a more severe disease course.
“Socioeconomic factors, lack of access to specialists, lack of education about MS treatments, and delays in diagnosis with more severe prognoses may contribute to disparities in health outcomes in the African American and Hispanic communities,” the researchers wrote.
Individuals from minority groups tend to be underrepresented in MS trials. This tendency, evident in both public- and industry-funded studies, can have negative consequences, including an unequal distribution of benefits from study participation across populations, further increasing healthcare disparities among minority groups.
Members of the MS Minority Research Engagement Partnership Network (MREPN) — a group of clinicians, researchers, and patient advocates working to identify and address barriers hindering minority participation in MS trials — suggested this trial inequity may be due in part to differences in perceptions and preferences.
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