Providence Brain Institute’s Multiple Sclerosis Center, in partnership with leading African American neurologists across the United States, has launched a first-of-its-kind effort to identify Black people with MS. The center asks that providers in Oregon and around the U.S. encourage their Black patients with MS to enroll in the registry.
Launched in September 2020, the National African American MS Registry will be used to estimate the number and geographic distribution of Black patients with MS. This will provide important clinical and demographic information to neurologists as we work in partnership with the Black community to care for patients with MS. This is especially important because of concerns that Black MS patients have reduced access to health care. Although people who are Black comprise 13.5% of the U.S. population, fewer than 1% are included in clinical trials.
The registry will work to enroll Black patients with MS from across the United States by reaching out to neurologists and patients. Information gathered from the registry, such as what, if any, care patients are receiving from an MS neurologist, will help identify the barriers Black patients with MS face. This will allow providers to develop care strategies, such as informing patients of MS neurologist locations and increasing use of telemedicine, to help eliminate inequities in access to care.
We began planning for this registry more than three years ago, following the racially divisive events in Ferguson, Missouri. Like many people, I was greatly disturbed by how African Americans were being treated, and I’m disheartened to see that it has not improved. Creating this registry is one way I personally can offer meaningful care, with Providence’s enthusiastic encouragement and support, to the Black community.
In planning for the registry, we reached out to three Black neurologists who specialize in MS and asked for their expertise and participation. These three highly regarded MS neurologists – Annette Howard, M.D., Houston, Texas; Annette Okai, M.D., Dallas, Texas; and Mitzi Williams, M.D., Atlanta, Georgia – and I have formed a steering committee that will direct the registry’s activity.
The registry’s infrastructure is modeled after Providence MS Center’s Pacific Northwest MS Registry, which has been in place for many years.
The institute’s goal is to have 5,000 patients enrolled in the new registry by October 2021 and 20,000 patients by October 2023. We appreciate your support in talking with your patients about the registry.
Your African American patients with MS can learn more about the registry at https://www.naamsr.org. (Please use Google Chrome to access the site).
Article authored by:
Stanley Cohan, M.D., Ph.D., medical director, Providence Multiple Sclerosis Center
About the AuthorMore Content by Providence Pulse Content Team