Retention of American Indian and Alaska Native participants in the National Alzheimer's Coordinating Center Uniform Data Set

Abstract

Introduction: The number of American Indian and Alaska Native (AI/AN) elders is expected to double by 2060. Thus it is imperative to retain AI/AN participants in longitudinal research studies to identify novel risk factors and potential targets for intervention for Alzheimer's disease and related dementias in these communities.

Methods: The National Alzheimer's Coordinating Center houses uniformly collected longitudinal data from the network of National Institute on Aging (NIA)-funded Alzheimer's Disease Research Centers (ADRCs). We used logistic regression to quantify participant retention at 43 ADRCs, comparing self-identified AI/AN participants to non-Hispanic White (NHW) participants, adjusting for potential confounding factors including baseline diagnosis, age, sex, education, and smoking.

Results: The odds of AI/AN participant retention at the first follow-up visit were significantly lower than those for NHW participants (adjusted odds ratio [aOR]: 0.599; 95%: 0.46-0.78; p < 0.001).

Discussion: These results suggest the need for improved strategies to retain AI/AN participants, perhaps including improved researcher-community relationships and community engagement and education.

Highlights: American Indian and Alaska Native (AI/AN) research participants were retained to the first follow-up appointment at lower rates than non-Hispanic White (NHW) participants. AI/AN participants are retained at lower rates than NHW participants for long-term follow-up. The majority of AI/AN participants were not retained to the second follow-up visit.

Keywords: Alzheimer's Disease Research Center (ADRC); Alzheimer's disease and related dementias (ADRD); American Indian and Alaska Native (AI/AN); National Alzheimer's Coordinating Center (NACC); National Alzheimer's Coordinating Center Uniform Data Set (NACC UDS); Native American Elders; data sovereignty; indigenous research; retention.