Communicating Heath Advancements from Native GEnetics Research (CHANGE Research)

Status: Current

Grant Start: 05/15/2025

Grant End: 04/30/2030

The American Indian and Alaska Native (AI/AN) population is increasing 3 times faster than the US population overall. By 2050, it is predicted that 1 in 3 AI/AN Elders will be diagnosed with Alzheimer’s disease and related dementias (ADRD). Despite advances in ADRD research among non-Hispanic Whites, little is known about the prevalence and risk factors for ADRD in AI/AN populations. This is in part due to low participation of AI/ANs in ADRD research. The National Institute on Aging and the Alzheimer’s Association have issued calls for an increase in minority participation in ADRD research. However, success has been evasive in efforts to recruit AI/AN populations into ADRD studies, particularly studies including biomarkers. Failure to include AI/ANs in biomarker or ADRD research further contributes to ongoing health disparities in ADRD research and healthcare outcomes because biomarkers are crucial in an accurate and timely diagnosis, and also play an important role in ADRD drug development. To increase AI/AN participation in ADRD research that includes biomarkers, it is critical to understand how to effectively communicate about biomarkers and genetic research with AI/ANs. This information can be used to create effective communication and recruitment material for ADRD research. In this study titled “Communicating Heath Advancements from Native GEnetics Research (CHANGE Research)” we will apply a multi-method approach to assess AI/ANs perceptions and knowledge of ADRD research and communication preferences. Using this information, we will create culturally tailored information material to educate AI/ANs about ADRD and biomarkers to promote their enrollment into ADRD research. Our Specific Aims are to: 1) partner with the United Indians of All Tribes Foundation to conduct a survey of 500 AI/AN adults about their knowledge and perceptions of biomarker research. Survey domains will also include preferences for health information, information seeking and opinions regarding AI/AN representation in ADRD research; 2) interview AI/AN adults regarding cultural barriers and facilitators to participating in ADRD research involving biomarkers. We anticipate that these interviews in conjunction with the survey results from Aim 1 will provide insights on barriers and facilitators to participating in research involving biomarkers and effective methods to communicate about ADRD research and biomarkers; and 3) create culturally tailored educational material and conduct a pilot study to demonstrate feasibility of a future randomized controlled trial. This innovative application provides an opportunity to discover critical information about how to communicate about biomarkers and ADRD research with AI/ANs and answers the National Institute on Aging’s call for research to better understand effective strategies for recruiting minorities into ADRD research and communicating health messages that are appropriate for diverse populations.

Funding Sponsors

  • National Institutes of Health (NIH)
  • National Institute on Aging (NIA)

Principal Investigator(s)

Team Member(s)