Multiple sclerosis (MS) is an autoimmune disease that damages the brain, optic nerves, and/or spinal cord. It's considered the most common cause of neurological disability among young and middle-aged adults in North America. Yet, despite multiple studies suggesting that MS symptoms may be more aggressive and cause more early disability among African Americans, this population has been historically underrepresented in research and other efforts to improve the lives of people with MS.
These factors are among the reasons that Providence and Dr. Stanley Cohan, founding director of the Providence Multiple Sclerosis Center in Portland, Oregon, teamed up with some of the United State’s leading African American MS neurologists and other MS experts to create the National African Americans with MS Registry, a patient-powered research registry focused on and led by African Americans.
Patient-Powered MS Research
Launched in 2021, the registry invites African Americans with MS to participate in a series of surveys to help researchers learn more about MS patients, the impacts and experience of the disease on their lives, and treatments. Goals include more accurately understanding the number and geographic distribution of African American people diagnosed with MS in the United States, the existence of barriers to access to care, and strategies that are needed to undo inequities of access.
“We know that MS affects people of all races and ethnicities. However, there is a clear and persistent gap in research that’s been inclusive of, led by, and focused on African Americans,” explains Dr. Cohan. “We want to change that, and the National African Americans with MS Registry is an important step in the right direction.”
Working Toward Solutions
“Ultimately, our goal is to improve care for African Americans with MS by increasing patient and healthcare provider knowledge, while improving access to the best care,” explains Dr. Cohan. “We also want to increase opportunities for African Americans to participate in clinical trials, so that the therapeutic needs of African Americans with MS are better addressed in research and medication development.”
To accomplish this, the team behind the Registry is reaching out directly to African American communities and their healthcare providers across the United States to increase awareness of the registry and encourage African Americans with MS to become active members. In addition to survey participation, a monthly newsletter for participants provides patient education about MS, including disease progression, medication information, clinical trials of potential interest and other useful information.
“It is important to emphasize the Registry’s potential impact on the care of African Americans with MS throughout the United States, as well as its ability to empower researchers to answer key scientific and social questions that will help address systemic inequities that exist today in MS research and care,” adds Dr. Cohan.
Patient privacy is a key principle of the project, and patients’ personal identities are not shown as part of any reports or made available to insurance or other companies. Only the MS Registry researchers will have access to the information provided for the registry.
This effort is sponsored by Providence St. Joseph Health, in a collaboration with nationally recognized African American MS neurologists, voluntary MS healthcare advocates, and the pharmaceutical industry.
To learn more, visit the NAAMS registry website at https://www.naamsr.org/
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