New Council Seeks Members to Drive Equity in MS Research
Disclosure: The author of this article is a member of iConquerMS™.
The problem of inclusivity in medical research is a longstanding one. In 2019, a spotlight on problems of diversity in clinical trials at a conference in Philadelphia revealed gaps in the demographic makeup of trial populations. Specifically, it was revealed that while minorities represent 38.7 percent of the US population, their rates of inclusion range from between 2 and 16 percent depending, upon the community. In particular:1
- the participation rate of African Americans in clinical research trials is less than 5 percent, and yet this community faces a 14 percent higher risk for dying from cancer.
- the participation rate of the Latino community in clinical research trials is only about 1 percent, yet Latinos make up almost 18 percent of the population.
Representation is important
The problem is deceptively simple: medical research studies need to include a more representative sample of the entire population if they are to report findings that can be generalized to the “real world.”
Another chief problem? People of different racial and ethnic backgrounds may have very different responses to FDA-approved drugs. In fact, a 2015 study conducted by the FDA found that 20 percent of the drugs the agency has approved since 2009 have revealed well-known differences in response and exposure across racial and ethnic groups.1
This means the problem of inclusivity in medical research isn’t only a question of fair representation, but about safety and efficacy for all who might need these drugs. Does the same hold true for medical research focused on MS? If not, what’s being done about it?
Is there diversity in MS research?
A closer look at MS research uncovers equally troubling findings. A recent University of Texas Houston study found that, when compared to their white counterparts, Black and Hispanic people living with MS are more likely to:2
- develop disability
- have different treatment responses
- experience symptoms linked to their eyes and spinal cord; white people with MS at disease onset complain more of sensory symptoms
- face more severe symptoms over time
- lose employment due to MS
The author of the study, MS and neurology fellow Dr. Carlos A. Pérez, wrote that "the racial makeup of MS clinical trials has consistently remained below 10% for minority groups since the 1990s, and current management guidelines are largely based on these studies.”2
This is to say that people living with MS who are not white are not being fairly represented in current research. Fortunately, patient advocacy organizations are rising to change this reality.
What is the RIDE Council?
The RIDE Council seeks greater, more representative diversity in clinical trials, as well as focus on more inclusive drug research to develop treatments, for all members of the MS community.3
This new council, created by the nonprofit iConquerMS™, seeks to work as a consortium to:
- learn about research approaches
- identify causes for underrepresentation
- collaborate on strategies to broaden participation in clinical research by all people with MS
Its main goal is to find ways to close the gap in research participation. If this doesn’t happen, then current and future research can only generate incomplete knowledge that’s less likely to help people from all backgrounds equally.
Interested in joining the RIDE Council?
The council is actively seeking participants and is accepting new applications through February 8, 2022.4
Interested candidates should:
- have a connection to MS (patient, caregiver, researcher, or advocate
- belong to groups that are typically under-included in medical research
Participants in the RIDE Council do not need prior research experience to participate. They’ll also be compensated.
More about iConquerMS™
iConquerMS™ is a PCORI*-funded initiative of the Accelerated Cure Project** for MS. Governed and driven by people living with MS, this free-access community gathers members together with a personal stake in MS—patients, caregivers, researchers, public health advocates—to empower those living with MS to participate in research.5
They offer a community forum where topics and questions most important to those living with MS can be addressed. Members can participate voluntarily in research studies, complete research surveys, and contribute to questions and propositions for further MS research. Finally, members of iConquerMS™ receive research updates based on the data collected through its large, collaborative community effort.
*Patient-Centered Outcomes Research Institute (PCORI), a US nonprofit created through the 2010 Patient Protection and Affordable Care Act to help patients, caregivers, employers, insurers, and policymakers make better-informed health decisions.6
**Accelerated Cure Project (ACP) is a patient-founded national nonprofit organization dedicated to accelerating advances toward a cure for MS.7
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