Clinical Trial Awareness in the Black Population from the National African Americans with Multiple Sclerosis Registry
Annette Okai1, Tamela Stuchiner2, Mitzi Williams3, Annette Howard4, Weston Anderson5, Chiayi Chen5, Stanley Cohan5
1North Texas Institute of Neurology and Headache, 2Providence Brain and Spine Institute, 3Joi Life Wellness Group, 4Annette M Howard, MD, 5Providence
Objective:
To assess access to MS care and opportunities to participate in clinical trials among NAAMSR participants.
Background:
Historically, the number of Black or African American people enrolled in clinical MS trials has been low. The National African Americans with Multiple Sclerosis Registry (NAAMSR) was created to identify barriers to care, reduce barriers to research participation and develop strategies to increase access to effective MS care.
Design/Methods:
As of April 2023, 601 Black Americans with MS had registered with NAAMSR. Participants received a survey collecting data on demographics, access to care, medication use, disability status, and quality of life. This study is a descriptive analysis of the first 277 completed survey responses received. We used Area codes from the U.S. Census to determine urban vs rural living domicile of participants.
Results:
Of the 277 participants, 86.6% were female, the mean age was 47.5 (±11.2). Mean age at diagnosis was 38.2 (±9.8). Five percent were unsure of their disease pattern, 80.1% reported having relapsing MS, and 14.5% reported having progressive MS. The mean time from symptom onset to diagnosis was 3.6 (±5.1) years. Eighty-four percent (n=225) reported use of a disease modifying therapy (DMT), and 16% (n=43) were on steroids or no DMT.
Ninety-six percent of participants lived in an urban metropolitan area, and 4% lived in a small town or rural area. Of 97.8% who reported seeing a neurologist, 85.4% (n=228) saw an MS specialist. Although 4.4% were currently participating in an MS trial for MS, 80.1% reported they had never been asked to participate in a clinical trial.
Conclusions:
Eighty percent of participants had never been asked to participate in a clinical trial. This result highlights the need to proactively inform Black patients of clinical trials to achieve equity in clinical research and improve clinical outcomes in Black people.