Project LEARNS: Learning Alzheimer’s Results and Next Steps - ABSTRACT Alzheimer’s disease and related disorders (ADRD), including its prodrome, mild cognitive impairment (MCI)2, affects nearly 7 million Americans. By 2050, it is estimated that 39% of the US population will be non-White, with Black Americans aged 65+ projected to more than double to 8.6 million. Older Black Americans are at a disproportionately higher risk of ADRD and have worse health outcomes, likely due to higher vascular risk factors, difficulties in access to care, and a lack of knowledge regarding ADRD risks, symptoms, diagnostics, and therapeutics. Approximately 50% of Americans have poor health literacy, defined as the capacity to obtain, process, and understand health information and available services to make reasonable health decisions. Low health literacy leads to negative health outcomes, higher hospitalization rates, lower use of preventative services, and limited research participation. There are now clinically available methods to obtain ADRD biomarkers that could increase early detection and inform intervention. Our experience conducting ADRD research with blood- based and genetic biomarkers in representative and generalizable cohorts calls for development of culturally resonant disclosure protocols which to date have been largely developed from predominantly White cohorts. It is becoming increasingly difficult to collect ADRD biomarkers solely as a research test without a return of results. Yet, an uninformed individual finding out their ApoE status or amyloid levels could have harmful effects in not disclosed in an appropriate way. Project LEARNS (LEarning Alzheimer Results and Next Steps) will study ADRD health literacy, capture ADRD risk factors, screen for cognitive impairment, collect and analyze biospecimens, disclose results, and develop best practices. We propose the following SPECIFIC AIMS: (1) Employ a novel, interactive, and immersive Brain Train Event to assess ADRD health literacy (DeLA) and stigma, and evaluate ADRD risk and resilience factors, social determinants of health, awareness of biomarkers and desire to receive results, subjective and objective cognitive function in 2500 Black American older adults and 2500 older adults from other racial and ethnic groups; (2) Collect blood-based biomarkers for diabetes (hemoglobin A1C), hyperlipidemia (lipid profile) and ADRD (PrecivityAD2 and ApoE) in 500 Black American older adults and 500 older adults from other racial and ethnic groups and conduct sequential disclosure of biomarker results (#1. lipids and A1C, #2. ApoE, #3. amyloid) using current non-tailored guidelines; and (3) Develop consensus-based best practice recommendations for ADRD biomarker disclosure in African American older adults using a modified Delphi approach to define barriers, facilitators, bioethical concerns, and preferences regarding the disclosure, reaction, and subsequent action of biomarker disclosure. Project LEARNS will examine if and how older adults prefer to receive ADRD biomarker results, the role health literacy plays in their decision making, and if tailoring increases research participation in Black Americans. Early detection and better management may increase preventative and intervention measures and reduce disparities in ADRD health outcomes.
