Precision Brain Health Monitoring for Alzheimer's Disease Risk Detection in the Framingham Study: Black & AA Recruitment Supplement

Boston University Medical Campus, Boston MA

Investigators

Linked publications & trials

Abstract

Project Summary This supplement seeks to explore alternative approaches to the recruitment and retention of Black American participants in AD/ADRD research utilizing digital assessments. Black Americans are underrepresented in the FHS cohort, which is predominantly non-Hispanic White. Participants who self- identify as Black represent only 1.7% of the FHS cohort, whereas they comprise 5.2% of Middlesex Country, which includes the town of Framingham and surrounding communities; this is lower than what is found within the state of Massachusetts where, the Black Americans comprise 9.3% of the total population. AD/ADRD affects Black Americans at higher rates than non-Hispanic Whites, which makes it essential that they be included in research, but recruitment efforts are limited in their success. One widely described factor making recruitment of Black Americans challenging is the lack of trust in scientific research subsequent to the historical abuse of this population by the U.S. government and scientists, and so we are centering the fostering of trust in our approach. We intend to work with two experts in Black community engagement to facilitate our efforts. Our first aim involves making connections with local Black leaders to have discussions about the needs of the community and how we can contribute to the needs so we might foster trust and collaboratively design an effective recruitment/retention protocol. The second aim is to implement and evaluate this newly developed recruitment/retention protocol by soliciting feedback from community members for whom the protocol was successful (increased interest in learning about the research) as well as from those for whom the protocol did not foster interest in engagement. We will revise the protocol based on this feedback, employ the revised procedures, and re-evaluate. The third aim is to ask those who expressed interest in learning more about our research to evaluate the digital data collection protocol and give feedback on which parts they would, and which they would not, be willing to do. They will then be invited to participate in our digital data collection study to increase representation of Black Americans. We anticipate collecting digital data from between 119-314 Black American participants.