This project intends to address the gaps in Alzheimer's disease (AD) and precision medicine
(PM) research in American Indian and Alaska Native (AI/AN) populations by comparing written
and video-based materials for recruitment into AD and PM research, and by creating an AD-PM
registry of AI/AN individuals who are willing to be contacted for future research
opportunities.
Description
This project intends to address the gaps in Alzheimer's disease (AD) and precision medicine
(PM) research in American Indian and Alaska Native (AI/AN) populations by comparing written
and video-based materials for recruitment into AD and PM research, and by creating an AD-PM
registry of AI/AN individuals who are willing to be contacted for future research
opportunities. The project will be a 3-arm RCT with a sample size of 501 AI/AN adults, aged
40 years and older. The RCT enables us to compare outcomes between groups to determine the
effect of a tailored brochure and video compared to non-tailored, text-based recruitment
materials, and assemble a large registry of AI/ANs with biospecimens and data from medical
records for future AD research.
The AI/AN population is growing as a proportion of the total US population, and gains in life
expectancy mean that the number of Native elders at risk of AD is rapidly increasing.
Therefore, there is a need for research in this understudied group.
The study procedures are expected to take participants approximately 2-3 hours to finish.
Participants will be asked to complete a pre-intervention self-report questionnaire and have
their height, weight, and neck circumference measured. Next, they will be randomized to one
of the 3-treatment arms. Participants allocated to the control condition will receive the
standard brochure on AD and PM, with standard text-based content not specifically tailored
for AI/ANs. Participants randomized to the intervention will either view a short culturally
tailored video (5 minutes) or read a culturally tailored educational brochure. All brochures
and video will contain the same base information on AD and PM. Participants will have as much
time as they need to review the material. After each participant has finished reading the
relevant brochure or viewing the video, they will be asked to complete post-intervention data
collection that includes: 1) an ADRD knowledge questionnaire and 2) enrollment in the AD-PM
Registry. If the participant chooses not to enroll in the AD-PM Registry, their participation
in the study is complete. If the participant agrees to enroll in the registry, they will be
asked to complete 3) the AD-PM Module, 4) biospecimen donation (blood, saliva, and urine
samples), and 5) permission to access medical records. Participants who complete the AD-PM
module and provide biospecimens but decline consent to access medical records will still be
added to the registry.