Dashboard
Link to the interactive dashboard : here or at https://master.d2k433yqsdk9w1.amplifyapp.com/
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Abstract
Clinical trials do not always have a great track record when it comes to diversity. Across an array of disease states, many people are excluded from research participation due to the constraints of eligibility requirements and barriers to clinical trial enrollment. These limitations inevitably result in largely homogeneous study pools. A consequence of this homogeneity is that clinical trial populations are not even representative of the disease they are studying, which leads to a lack of generalization of the research. An even greater problem arises when lack of research participation of underrepresented populations leaves unanswered questions on how to best treat under-served populations. Multiple Sclerosis research is no exception to the exclusion that is evident in clinical trials, and people of color are largely left out of MS research. EquityMS takes a deep dive into the issue.
Founded in June 2020, EquityMS is a project that centers on highlighting the disparities that exist in MS research, as well as the inequities that prevent under-served groups from receiving much-needed MS specialty care. We seek to bring awareness of inequitable research practices in hopes of encouraging MS researchers, sponsors and publishers to green-light more inclusive trials. Specifically, we conducted early research on the under-reporting and under-representation of people of color in MS phase III trials, for which lead researcher Helen Onuorah was awarded the MS international Federation’s Young Investigator Award at the joint ACTRIMS-ECTRIMS MSVirtual2020 conference. Similarly, we conducted a systematic review titled “Enrollment of non-White participants and reporting of race and ethnicity in phase III clinical trials of MS disease modifying therapies: A Systematic review,” which is in progress of being published at Neurology. This research was presented at the 2021 ACTRIMS Young Investigator Summit, for which Helen was awarded the prize for Best Oral Presentation during the Data Blitz showcase. A data dashboard corresponding with our review has been jointly published and can be found at the link below.
Furthermore, our team is exploring solutions for increasing diversity in MS trials through the mitigation of enrollment barriers and promotion of equitable recruitment practices. All the while, we are motivated to develop culturally-sensitive and inclusive patient resources that increase the health literacy of all people with MS in and around our community. Through our efforts, we hope to make research and healthcare more inclusive for people with MS.
Cite us :
Onuorah HM, Charron O, Meltzer E, Montague A, Crispino A, Largent A, Lucas A, Freeman L. Enrollment of Non-White Participants and Reporting of Race and Ethnicity in Phase III Trials of Multiple Sclerosis DMTs: A Systematic Review. Neurology. 2022 Jan 19:10.1212/WNL.0000000000013230. doi: 10.1212/WNL.0000000000013230. Epub ahead of print. PMID: 35046135.
Contact us: ms.io@austtin.utexas.edu
