The MREPN is a multi-stakeholder collaborative network focused on increasing the participation of underrepresented communities in MS research. Founded in 2016 with funding from the Patient-Centered Outcomes Research Institute (PCORI), the network includes people with MS, healthcare providers, researchers, and representatives from advocacy organizations and biopharmaceutical companies. Together we discuss the barriers to inclusive research and how to address them, and collaborate on efforts to understand and increase the level of minority engagement in MS research.
Survey: In 2017, members of the MREPN surveyed 2,599 people diagnosed with MS to understand similarities and differences across racial and ethnic groups in terms of attitudes and experiences regarding research participation. Our findings showed that people in all groups believe in the value of research and are willing to participate, but representatives of minority communities are more likely to express concerns about participation.
The findings were published in the International Journal of MS Care (open-access). Perceptions and Preferences Regarding Multiple Sclerosis Research Among Racial and Ethnic Groups. Pimentel Maldonado, D, et al. Int J MS Care (2021). doi:10.7224/1537-2073.2019-131.
Toolkits: The MREPN has published two toolkits providing guidance and best practices for increasing engagement and recruitment of minority group members in MS research studies. One toolkit is written for researchers enrolling participants in their MS studies, and the other is written for clinicians who can play a key role in connecting their patients with research opportunities. Both are available for download.
Resource repository: A wealth of information is available across the internet regarding MS research engagement, MS health equity, the impact of MS on racial and ethnic groups, and related topics. To help highlight the availability of this valuable information, members of an MREPN workgroup have compiled the MREPN Resource Repository, an online catalog of resources which include journal articles, videos, toolkits, websites, and other content aimed at professional and lay audiences. The catalog can be easily filtered and searched to find items of interest.
Bi-monthly meetings: The MREPN holds meetings every other month to share information, identify opportunities to collaborate and provide support, and plan MREPN projects. Recent meetings have featured presentations about Genentech’s CHIMES clinical trial, the Accelerated Cure Project’s RIDE Council, and the MS Association of America’s MS Implementation Network.
Join the MREPN: Membership in the MREPN is free of charge and open to everyone. We are happy to welcome anyone who shares our commitment to making MS research more diverse and representative. To become a member, please contact us at msminorityresearch@acceleratedcure.org
