Addressing the knowledge and recruitment gap in Alzheimer's disease and precision medicine research among Native people: an innovative randomized controlled trial.

Abstract

Background: The American Indian and Alaska Native (AI/AN) population is increasing and AI/AN people are living longer than ever before. Although aging-related health issues such as cognitive impairment, dementia, and Alzheimer's disease (AD) are becoming more visible among this population, reliable data on AD prevalence and risk factors among AI/AN people are nearly nonexistent. Concurrently, precision medicine (PM) has demonstrated significant potential for detecting and treating diseases such as AD. For PM to promote health equity for underserved populations, it must not exacerbate existing health disparities and bias in research. There is also little information about preferences among AI/AN people for communicating information regarding AD, PM, or recruitment into clinical trials. Communication barriers and few known facilitators contribute to low rates of AI/AN research participation. This study seeks to address the gaps in AD and PM research among AI/AN communities and promote knowledge of, attitudes towards, and interest and participation in AD-related PM research efforts.

Methods: We designed a three-armed RCT to determine the effect of a culturally tailored brochure and video compared to non-tailored recruitment materials. Participants were recruited in Rapid City, South Dakota and were required to meet the following eligibility criteria: 1) identify as AI/AN; 2) be able to speak, read, and understand English; 3) be aged 40 or older; and 4) have the cognitive and decisional capacity to consent and sign and date the informed consent document.

Results: We enrolled 914 in the RCT and 812 have been randomized to a study condition. The mean age is 54 years (standard deviation = 10.3 years); 62% are female. Overall, 22% reported a parent, grandparent or sibling have been diagnosed with AD, and 22% reported a family member with an other type of dementia. One quarter (25%) of participants reported having an undiagnosed memory problem themselves, and 22% reported having a family member with undiagnosed memory problems. Of randomized participants, 743 (72%) enrolled in the research registry.

Conclusions: This study will inform future recruitment efforts for ADRD-focused clinical trials. Enrollment of AI/AN participants in an Alzheimer's Disease-Precision Medicine (AD-PM) Registry will provide opportunity for future research on this topic in partnership with this population.