There are many active research projects accessing and applying shared ADNI data. Use the search above to find specific research focuses on the active ADNI investigations. This information is requested annually as a requirement for data access.
| Principal Investigator | |
| Principal Investigator's Name: | Lauren Garcia |
| Institution: | Mary S. Easton Center for Alzheimer's Research and Care at UCLA |
| Department: | Neurology |
| Country: | |
| Proposed Analysis: | Research Plan – ADNI Health Scholars Program Title of Research Project Breaking Down the Recruitment Barriers: A Cross-Sectional Survey to Understand Motivations for Participating in Alzheimer’s Disease Clinical Research by Underrepresented Communities in Los Angeles County Introduction/Background The World Health Organization (WHO) classified Alzheimer’s disease as a priority global public health issue (Lane et al., 2017). Alzheimer’s disease currently affects more than five million Americans today, and by 2050, that number will more than likely double (Olivari, French, & McGuire, 2020). Even more alarming is that Alzheimer's disease disproportionately affects minority communities. Compared to Caucasians, Hispanics have 1.5 times increased risk of developing Alzheimer's disease, and African Americans have twice the risk of developing Alzheimer’s disease (Matthews et al., 2019). Health disparities (i.e., educational attainment, household income, stigma, and healthcare access) can increase the odds of developing Alzheimer’s as well (Babulal et al., 2019). There is a recognition that there needs to be more emphasis on having more diversity in Alzheimer’s disease clinical research; however, there is a multitude of barriers affecting the opportunities to recruit minority Alzheimer’s disease patients (Babulal et al., 2019). Examples of barriers affecting the diversity pool in Alzheimer’s clinical research include insufficient recruitment budgets, limited resources for research document translation, dearth of relationships with minority physicians; currently, there are not enough researchers trained to effectively tackle these barriers (Amorrotu et al., 2018; Babulal et al., 2019). Therefore, more researchers need to take public health approaches to improve the rate of diverse participants in Alzheimer’s disease and aging clinical research. Using a community health lens, health practitioners can have more objective approaches to addressing the diversity gap in Alzheimer’s disease clinical research. Research Questions/Specific Aims Research Questions 1. What are the current referral methods identified by minority participants that helped them learn about the ADNI study? 2. What influences motivate underrepresented populations to participate in Alzheimer’s disease clinical research? 3. What can new referral methods research teams use to improve the diversity rate in Alzheimer’s disease and aging research studies? Specific Aims 1. Identify referral methods disclosed by minority participants from the ADNI dataset. 2. Discover reasons why minority participants would decide to participate in research studies on Alzheimer’s disease and aging. 3. Establish potential new recruitment techniques that could be effective in improving the diversity rate for Alzheimer’s disease and aging research studies. Methods ADNI Database Analysis The ADNI database contains several data types from many study volunteers throughout the various ADNI studies (Alzheimer’s Disease Neuroimaging Initiative, n.d.). Specifically, I will be working with the clinical data. The clinical data contains information about each subject’s demographics and self-reported referral methods (Alzheimer’s Disease Neuroimaging Initiative, n.d.). The focus of using the ADNI database is for our research team to get a more comprehensive understanding of where ADNI participants are specifically recruited and a baseline number of current ADNI participants identifying as a minority. Determining the ADNI minority participants will be based on the participant’s self-response answer to the race/ethnicity question during the ADNI screening visit. Conducting this ADNI database analysis will address our study's first specific aim and research question. Questions for our cross-sectional survey will depend on the self-reported recruitment methods identified by the current ADNI minority participants. The cross-sectional survey our research team will build will introduce new types of recruitment methods not previously reported. We will be using SPSS or SAS to analyze the dataset. Cross-Sectional Survey The cross-sectional survey will address the second and third research questions and specific aims. Our main objectives of the cross-sectional survey are to understand whether specific influences motivate underrepresented communities to participate in research and to identify new potential recruitment methods the ADNI team can use to improve their minority recruitment rates. The analysis of the ADNI database data will drive what types of questions we ask in our cross-sectional survey. The first part of the cross-sectional survey will ask for demographic information. The participant’s location/city within Los Angeles County is an essential demographic data point for our study. Since Los Angeles County has a relatively diverse population, we want to see whether the responses to the rest of the cross-sectional survey data are the same or different based on the city the participant lives in (United States Census Bureau, 2021). The second part of the cross-sectional survey will ask various reasons why minority participants would participate in Alzheimer’s disease clinical research. By asking about these reasons, we can understand what potential motivations could influence underrepresented populations in Los Angeles County to participate in research. This information is critical to provide insight into recruiting minority participants in research studies. Once our team analyzes this data, we can recommend potential solutions to improve diversity in Alzheimer’s disease clinical research. Dissemination of this survey will be done in person and online. Our research team is interested in whether distributing the survey in-person or online is a more practical approach to reaching out to minority communities. We will analyze the number of surveys given in-person and online by race/ethnicity. This data will be part of the report to provide the ADNI team with another piece of vital information to improve their diversity recruitment rates. We will be using multiple outreach mediums to obtain a high response rate. Some examples of outreach opportunities include churches, educational events, support groups, and online advertisements. Research Team Lauren Garcia, MPH Lead Researcher (Graduate Student) Clinical Research Coordinator Kagan Clinical Trials Program, Mary S. Easton Center for Alzheimer’s Research and Care at UCLA, David Geffen School of Medicine, Department of Neurology, University of California, Los Angeles Doctoral Student School of Community & Global Health, Claremont Graduate University Maryam Beigi, MD ADNI Principal Investigator Associate Director Mentor Kagan Clinical Trials Program, Mary S. Easton Center for Alzheimer’s Research and Care at UCLA, David Geffen School of Medicine, Department of Neurology, University of California, Los Angeles References Alzheimer’s Disease Neuroimaging Initiative. (n.d.). Data types. ADNI. https://adni.loni.usc.edu/data-samples/data-types/ Amorrortu, R. P., Arevalo, M., Vernon, S. W., Mainous, A. G., 3rd, Diaz, V., McKee, M. D., Ford, M. E., & Tilley, B. C. (2018). Recruitment of racial and ethnic minorities to clinical trials conducted within specialty clinics: an intervention mapping approach. Trials, 19(1), 115. https://doi.org/10.1186/s13063-018-2507-9 Babulal, G. M., Quiroz, Y. T., Albensi, B. C., Arenaza-Urquijo, E., Astell, A. J., Babiloni, C., Bahar-Fuchs, A., Bell, J., Bowman, G. L., Brickman, A. M., Chételat, G., Ciro, C., Cohen, A. D., Dilworth-Anderson, P., Dodge, H. H., Dreux, S., Edland, S., Esbensen, A., Evered, L., Ewers, M., … International Society to Advance Alzheimer’s Research and Treatment, Alzheimer’s Association (2019). Perspectives on ethnic and racial disparities in Alzheimer’s disease and related dementias: Update and areas of immediate need. Alzheimer’s & dementia: the journal of the Alzheimer’s Association, 15(2), 292–312. https://doi.org/10.1016/j.jalz.2018.09.009 Lane, C.A., Hardy, J., & Schott J.M. (2017). Alzheimer’s disease. European Journal of Neurology. 25(1), 59-70. https://doi.org/10.1111/ene.13439 Matthews, K. A., Xu, W., Gaglioti, A. H., Holt, J. B., Croft, J. B., Mack, D., & McGuire, L. C. (2019). Racial and ethnic estimates of Alzheimer’s disease and related dementias in the United States (2015-2060) in adults aged ≥65 years. Alzheimer’s & dementia: the journal of the Alzheimer’s Association, 15(1), 17–24. https://doi.org/10.1016/j.jalz.2018.06.3063 Olivari, B.S., French, M. E., & McGuire, L. C. (2020). The public health road map to respond to the growing dementia crisis. Innovation in Aging, 4(1). https://doi.org/10.1093/geroni/igz043 United States Census Bureau. (2021). Quickfacts: Los Angeles County, California. Census. https://www.census.gov/quickfacts/losangelescountycalifornia |
| Additional Investigators |
