Advancing clinical research, particularly for conditions like Alzheimer?s disease (AD) and Alzheimer?s disease related dementia (ADRD), benefits from the participation of a demographically and economically diverse pool of study participants. Despite representing 19% of the United States population, individuals from rural communities are vastly underrepresented in AD/ADRD research. In addition, individuals from rural communities face difficulties in access to dementia healthcare. The effects of demographic and geographic inequities between rural and urban populations on the incidence, biology, and trajectory of AD/ADRD in rural populations have not been clarified. Thus, a longitudinal study of a well-characterized cohort of rural individuals with AD/ADRD would greatly help in addressing these inequities and clarify the impact of AD/ADRD in diverse populations. In the State of Nevada, 9.5% (~280,000) of the population reside in rural areas. Access to healthcare for these rural communities is difficult, with some Counties having no licensed medical professionals at all. Patients with specialty needs, such as those with AD/ADRD, have increased difficulty since expert neurologists are located only in metropolitan areas. These difficulties have motivated the Cleveland Clinic Lou Ruvo Center for Brain Health (LRCBH) and University of Nevada, Las Vegas (UNLV) to create the Nevada Exploratory Alzheimer?s Disease Research Center (NVEADRC). The overall goal of the NVEADRC is to strengthen simultaneously the dementia education in rural medical professionals, and to develop a research cohort of rural patients with AD/ADRD with the collaboration or rural medical professionals. The Clinical Core (CC) is responsible to execute two specific aims.
In Aim 1, the CC will build a rural research cohort on which it will carry out longitudinal assessments. We will start our rural community activities in three rural communities in Nevada, which already have strong collaborations with the LRCBH. By establishing regularly scheduled dementia assessment locations, educating and training local health care providers in dementia care, and conducting population-based dementia advocacy, we will develop the infrastructure and trust needed for meaningful AD research in rural communities. We will establish a cohort of 100 research participants balanced between two psychometrically-defined groups, mild cognitive impairment (MCI; n=20) and dementia (AD; n=40), as well as an age-matched cognitively normal control group (NC; n=40). Enrolled participants will be followed with annual clinical and neuropsychological assessments, neuroimaging, and fluid biomarkers. Enrolled individuals will be encouraged to consent for brain donation. All data will be shared with the scientific community.
In Aim 2, LRCBH and UNLV investigators will analyze our rural cohort data and specimens, and compare the outcomes with the National Alzheimer's Coordinating Center (NACC) database. For this, after we collect Uniform Data Set (UDS) and additional AD-related medical data and biomarkers, we will analyze the data internally. Our results will be compared to an age- and gender-matched urban-dwelling population randomly selected in the NACC database. The efforts from our CC will largely contribute to National Alzheimer?s Plan Act (NAPA) milestones.
