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The Need for More Black Representation in Alzheimer’s Clinical Trials

The Need for More Black Representation in Alzheimer’s Clinical Trials

Alzheimer’s Disease (AD) is the most common type of dementia, which is a general term for the impaired ability to remember, think, and make decisions that interfere with everyday activities. It’s a progressive disease beginning with mild memory loss and possibly leading to loss of the ability to carry on a conversation and respond to the environment.

According to the Alzheimer’s Association, as many as 5.8 million Americans are living with Alzheimer’s disease, and Blacks are about twice as likely as non-Hispanic Whites to develop AD and other forms of dementia Among Black Americans ages 70 and older, 21.3% are living with AD. Blacks are also carrying a disproportionate burden of the overall national cost for AD, which is mainly from caregiving costs, as well as loss of income and productivity, according to Stephanie Monroe, director of the African American Network Against Alzheimer’s. “Alzheimer’s is costing Blacks generations and generations of income and wealth that’s been built since the Civil Rights era,” Monroe told Caregiver Crossing, a podcast focused on caregiving.

Researchers are still examining why Blacks are impacted disproportionately by AD. Studies show that it’s a combination of socioeconomic disparities, higher rates of chronic diseases such as diabetes and heart disease, and genetics. Lack of participation in trials is another contributing factor. Last year, the National Institute on Aging, part of the U.S. National Institutes of Health, launched an online tool, OutreachPro, to help researchers and clinicians increase awareness and participation in clinical trials in Alzheimer’s disease and other dementias, especially among traditionally underrepresented communities. The tool, launched at the 2021 Alzheimer’s Association International Conference in Denver, allows researchers, clinicians, and trial administrators to create and customize outreach materials such as websites, handouts, videos, and social media posts with an emphasis on reaching traditionally underrepresented communities. “Outreach Pro was designed to provide well-tested and culturally appropriate outreach materials that resonate with diverse populations and encourage them to participate in clinical trials,” said Dr. Holly Massett, Ph.D., Senior Advisor on Clinical Research and Engagement at NIA, who oversees the implementation of the national strategy.

Researchers have begun to focus on having diverse participant populations in clinical trials. In the AHEAD Study, extensive efforts have been made to include underrepresented populations.

The study is designed to evaluate a potential treatment to slow the earliest brain changes and help prevent symptoms associated with Alzheimer’s disease. It’s the first  AD research study to recruit people as young as 55 years old who are at risk of developing symptoms of the disease as they get older.

In order to qualify for the study, potential participants are adults ages 55-80 who have not been diagnosed with Alzheimer’s disease or another dementia. The treatment is experimental and participation is approximately 4 years with a variety of options available to accommodate participants’ busy schedules. Most study sites provide reimbursement for travel and a stipend for attending study visits.  Those interested in participating in the AHEAD study can apply here.