Black Americans are at greater risk of Alzheimer’s. Our study aims to find out why

Anyone older than 65 is at increased risk of Alzheimer’s disease, the most common form of dementia. But African Americans are in even greater danger.

African Americans are about twice more likely to have Alzheimer’s disease than whites and are more likely to suffer severe effects. African Americans, like Mexican Americans, tend to get Alzheimer’s about 10 years earlier.

An estimated 5.8 million people in the U.S. have Alzheimer’s. By 2060, that figure could balloon to 14 million, with African Americans and Mexican Americans being the most affected, according to the U.S. Centers for Disease Control and Prevention.

Given the scale of the disparity, one might expect that African Americans play a pivotal role in research studies to understand the disease. Unfortunately not. The vast majority of Alzheimer’s research has focused exclusively on white participants.

This matters because we know Alzheimer’s is a complex disease that doesn’t manifest and develop equally in people of varying ethnicities. We do not yet understand why. The answers are key to the development of new therapeutics that account for individual differences among patients – biology environment, lifestyle and more – rather than a one-size-fits all approach.

We’ve seen great benefits of this approach, known as precision medicine, in oncology. Treatments are now tailored to target specific hormones in each patient that fuel cancer growth. Survival rates have improved.

How can we accomplish the same for Alzheimer’s? The University of North Texas Health Science Center at Fort Worth has taken a monumental step by combining world-class Alzheimer’s research with an emphasis on health disparities. HSC is investing $7 million to recruit 1,000 African Americans older than 50 to participate in a study underway on our campus.

The work, known as the HABLE study, launched in in 2017 with a $12 million National Institutes of Health grant. Almost 1,000 Mexican Americans and 1,000 non-Hispanic whites older than 50 are enrolled. The study examines how different biological causes relate to Alzheimer’s disease across ethnicities. This summer, the federal National Institute on Aging provided an additional $45 million for the work.

Each participant undergoes free comprehensive interviews, functional exams, clinical laboratory tests, a brain MRI and more. HSC created a state-of-the-art imaging center in the Institute for Translational Research to perform two PET scans on every participant to look for beta amyloid or tau proteins, which are biomarkers for Alzheimer’s.

Two years later, each participant will undergo two more PET scans to compare the proteins’ growth. At participants’ requests, HSC will share results of these state-of-the art exams and tests with their doctors to guide important decisions about their health now.

With the recruitment of 1,000 African Americans beginning in January, the HABLE study will be the only comprehensive, large-scale Alzheimer’s research study into the three largest ethnic groups in the U.S. – Non-Hispanic whites, Mexican Americans and African Americans. It is unprecedented.

Many factors cause lack of minority representation in research studies. Recall the infamous Tuskegee experiment in which Black men unknowingly participated in a study into untreated syphilis and you understand why African Americans hold a deep-rooted mistrust for the science and health care fields.

Additionally, researchers too often overlook the cultural and linguistic needs of underserved communities when planning and conducting research studies. They fail to consider the need, for example, to provide child care for women being recruited into a study or transportation to those without it.

HSC has long worked to build trustful, engaging relationships with underserved communities to prevent health disparities like increased rates of hypertension and diabetes. This same approach can help us unlock the secrets of Alzheimer’s and discover more effective treatments for all.