Almost 7 million Americans are living with Alzheimer’s disease (AD) and older Black individuals are twice as likely as older white individuals to have the disease or dementia, according to the Alzheimer’s Association. Black Americans also typically experience greater cognitive impairment and symptom severity than white individuals. Despite this elevated risk for those of African ancestry, they have historically not been well represented in most genetic-based studies focused on Alzheimer’s disease – which is a disease that has a pronounced genetic component and an estimated heritability of 60% to 80%.
Community Outreach and Recruitment: Here and Abroad
To assist in the inclusion and health equity of this disease, Goldie Byrd, PhD, professor of Social Sciences and Health Policy and director of the Maya Angelou Center for Health Equity (MACHE) at Wake Forest University School of Medicine, is leading the national community-engaged research, outreach and recruitment efforts for a $46 million grant from the National Institutes of Health. This grant is aimed at building and expanding the representation of those of African ancestry and Hispanic/Latinx (HL) individuals in AD genetic studies.
Investigators at the University of Miami’s John P. Hussman Institute for Human Genomics are leading the larger multi-site initiative along with investigators at Case Western Reserve University, Columbia University, the University of Pennsylvania and the University of Ibadan, in Nigeria.
“It is imperative that we diversify our research because all populations, regardless of socioeconomic status, sex, gender or geographical location, should benefit from resources, potential interventions or future therapies. Without this, we can’t create an intervention or a therapy for everybody.”
– Goldie Byrd, PhD, professor of Social Sciences and Health Policy and director of the Maya Angelou Center for Health Equity
Byrd will help lead the community engagement and recruitment of a 13,000-member cohort that is comprised of 5,000 individuals from nine African countries, 4,000 African Americans and 4,000 HL individuals. The data collected from participants will be added to existing databases of harmonized data from other ongoing studies as part of the Alzheimer’s Disease Sequencing Project and will represent the largest cohort for AD studies in these populations.
Clinical Trials in Africa
As part of this grant, Byrd and Takiyah Starks, program manager at MACHE, recently traveled to Kenya to learn more about socioeconomical barriers to help compile their research. While in Kenya, they researched commonalities and discussed with their Kenyan counterparts ways to address community outreach, engagement and recruitment initiatives.
“During our visit, Dr. Byrd and I were able to sit down and connect with Kenyans and really hear about some of their successes and obstacles. We found that we have many similar barriers in common,” said Starks. “Though Alzheimer’s disease is present in individuals across diverse populations and ancestral groups, genetic studies historically have not been very diverse and our goal through this grant is to remove barriers and cultivate trust.”
The purpose of the community engagement and recruitment component is to build trust with underrepresented communities, raise awareness about AD across diverse groups and recruit a diverse cohort of study-ready individuals for genomic, biomarker and social determinants of health research.
“If we only conduct research with people who are highly educated, with considerable neighborhood resources, or people who are heterosexual, we aren’t going to get an accurate representation of society,” said Byrd. "We want to expand that. We want to diversify our research, and to do that, we have to get into communities and draw the people in who are typically not included in studies.”
Understanding Clinical Trial Mistrust
Not only do Black people have a history of exclusion from medical trials based on societal access and lack of information provided to them about trials, they also have high levels of mistrust with clinical trials due to past negative experiences with science and medicine. Nearly 62% of Black Americans believe that medical research is biased against people of color, according to the Alzheimer’s Association.
The most common reasons Black Americans do not want to participate in clinical trials is the fear of being a test subject – which almost 70% of African Americans name as a concern – and these individuals are also far more likely than other racial groups to be concerned about getting sick from treatment.
“There are many legitimate reasons that people of color have distrust and mistrust; but the literature, and our own work, show that we can make inroads if we engage the community in appropriate and trustworthy ways, and that is our mission,” said Byrd. “One of the things we’ve done is maintained a transparent and authentic presence in the communities of interest. If they want to talk about the Tuskegee Syphilis Study, we talk about the Tuskegee study, or anything else they would like to discuss, including the effects of enslavement, racism and discrimination on overall health outcomes. All of these groups have their own histories, their own cultures and perceptions about us as investigators, so it is incumbent upon us to ask the community what it needs and to be honest in our responses.”
The study will span over five-years and Byrd hopes that by increasing diversity in Alzheimer’s disease research and clinical trials, this will be one major step toward closing gaps in Alzheimer’s disease health disparities.