Pathways to enrolling diverse Latinos in autopsy studies: Insights from a largelongitudinal study

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PROJECT ABSTRACT This is an application for a K01 award for Dr. Alejandra Morlett Paredes, a postdoctoral fellow in the Neurosciences department at the University of California, San Diego (UCSD). Dr. Morlett Paredes is establishing herself as a young researcher conducting research to further understand Latino’s intentions to consent and participate in brain donation studies and those that include invasive procedures for Alzheimer’s Disease and Related Dementias (ADRD) research. This K01 award will provide Dr. Morlett Paredes with the support and time necessary to accomplish the following goals: (1) gain proficiency in community engagement and recruitment; (2) gain proficiency in mixed methods and survey research methodologies; (3) gain proficiency in neuropathology of dementias; and (4) to develop grantsmanship and professional skills. To achieve these goals, Dr. Morlett Paredes has assembled an expert mentoring team, including her primary mentor: Dr. Hector M. González (expertise in neuroscience) and co-mentoring team: Drs. Lisa Barnes and David X. Marquez (experts in community-based recruitment with underserved populations), Dr. Mark R. Luborsky (expert in mixed methods and survey development) and Dr. Anne Hiniker (expert in Alzheimer’s disease neuropathology and brain autopsy process). The goal of the proposed project is to develop a survey instrument and culturally-tailored educational material that will measure intention to consent and participate in brain donation studies for ADRD research among older and diverse Latinos. Dr. Morlett Paredes will achieve this goal through the following specific aims: Aim 1: (a) Develop and validate a new questionnaire, informed by the Organ Donation Model, to assess dimensions of older Latinos’ intent to participate in brain donation research amongst community based and UCSD ADRC participants; (b) Design culturally-tailored educational information through use of focus group techniques. Implement the new instrument developed in Aim 1a to pilot test the impact of these materials by comparing pre- and post-intervention scores on attitudes and intention to consent and participate in brain donation research using UCSD ADRC participants and older community-based Latinos from the San Diego area. Aim 2: Implement the new survey instrument in a large cohort of diverse older Latinos from the SOL-INCA to obtain information on attitudes and intention to participate in brain donation research. If validated, this study will be used to develop an R01 to enroll diverse Latinos in autopsy studies at ADRCs across the US proximal to 4 SOL-INCA Field Centers in Bronx, Chicago, Miami, and San Diego, beginning with the UCSD ADRC.