Engaging Minorities with MS in Research: How Patients Learn about and Consider Research Participation

Thursday, May 31, 2018
Exhibit Hall A (Nashville Music City Center)
Hollie Schmidt, MS , Accelerated Cure Project for MS, Waltham, MA
Debra I Frankel, MS OTR , Advocacy, Services and Research Department, National Multiple Sclerosis Society, NY, NY
April Moreno, PhD MPA , Biomedical Informatics, UCSD School of Medicine, La Jolla, CA
Mitzi J Williams, MD , Multiple Sclerosis Center of Atlanta, Atlanta, GA
Lilyana Amezcua, MD, MS , Neurology, University of Southern California, Los Angeles, CA
Shawn Feliciano, B.S. , Accelerated Cure Project for MS, Waltham, MA
Anita Williams, M.S. , Accelerated Cure Project for MS, Waltham, MA
Daniel Machemer, PhD , Genentech, Inc., South San Francisco, CA
Terrie Livingston, PharmD , Biogen, Weston, MA
Monique LaRocque, MPH , Feinstein Kean Healthcare, Washington, DC
Melissa Glim, MPH , Feinstein Kean Healthcare, Washington, DC
Daniela Pimentel Maldonado, MD , University of Massachusetts Medical School, Worcester, MA


Racial and ethnic disparities in research participation have been reported in multiple sclerosis (MS) research, leading to concerns as to whether findings apply to all ethnic populations and the potential for unequal distribution of the benefits of research across the MS population. The multi-stakeholder MS Minority Research Engagement Partnership Network was formed under an award from the Patient Centered Outcomes Research Institute (PCORI) to better understand and address the problem of underrepresentation of minority participants in MS research.


The objectives of this study were to survey people with MS about their experience with MS research, including where/how they learn about research opportunities and their perceptions and preferences about research participation, and to analyze these data, including differences in responses among racial and ethnic groups to inform recruitment strategies and research methods.


Network members developed a web-based survey in English and Spanish to gather data on research experience, concerns, and preferences among people with MS. Invitations to take the survey were distributed by network members and partner organizations.


The survey was completed by 2611 participants with MS (2114 Caucasian, 216 African-American; 188 Hispanic; year of birth 1965 +/- 12; 521 diagnosed > 20 years ago; 869 treated at an MS center; 1026 previously participated in MS research). Respondents most often identified MS organizations and MS blogs and websites as sources of information about MS research, and named their doctor/nurse as well as MS organizations as trusted sources of MS research information. Top concerns across all groups about participating in research studies included not being fully informed about the study, receiving poor quality medical care, losing their health insurance, and having personal information released without their approval. Differences between racial and ethnic groups were noted; for instance African-Americans were more concerned than Caucasians about being used or taken advantage of by the research team (62% vs. 41%).


Understanding where and how people with MS learn about research and their concerns about participation can significantly influence research recruitment strategies. Ascertaining differences among racial/ethnic groups regarding attitudes and beliefs about MS research can facilitate approaches that effectively engage minorities with MS in research.