20- Información de la Enfermedad de Alzheimer para Latinos (IDEAL): A Study Framework for Alzheimer's Genetic Risk Disclosure in an Urban, Latino Population

Background: The IDEAL study is a randomized clinical trial investigating the psychosocial, behavioral, and cognitive impacts of genetic risk disclosure for late-onset Alzheimer’s disease (LOAD) among Latinos.

Methods: We used address-based sampling in northern Manhattan to recruit Latinos aged 40-64 for a community-based survey and clinical trial. Data collection encompasses demographics, Alzheimer’s disease (AD) family history, knowledge and beliefs about AD and genetics, current mental health status, acculturation, impact of COVID-19, familism, fatalism, caregiver status, and prior AD genetic testing. Eligible participants are invited to complete an education session and provide informed consent before receiving genetic testing for APOE, a key LOAD predictor. The clinical trial component will include 400 participants, who are randomized to learn their LOAD risk by age 85 based on either Latino ethnicity and family history alone or the same factors plus APOE genotype. Risk information is provided through semi-structured genetic counseling sessions. Psychological impacts, health-related behavioral changes, and memory performance are evaluated six weeks, nine months, and fifteen months post-disclosure via surveys and in-depth qualitative interviews.

Results: From 91,433 invited households, 5,542 (6.1%) responded, and 2,087 (2.3%) were eligible and completed the Baseline survey. Most were 40-49 years old (41.2%), women (70.5%), identified as Dominican (53.7%), had some college education (63.2%), and completed the survey in English (74.6%). About half reported a family history of AD (48.6%).

Conclusion: This study addresses gaps in understanding of impacts of AD genetic risk disclosure among Latinos and contributes valuable insights through its mixed-methods approach.

Authors: Sophia Rodriguez, Gertrude H. Sergievsky Center, Columbia University Irving Medical Center, New York, NY; Daniela Diaz Caro, Gertrude H. Sergievsky Center, Columbia University Irving Medical Center, New York; John B. Wetmore, Gertrude H. Sergievsky Center, Columbia University Irving Medical Center, New York,; Jonathan D. Godinez, Gertrude H. Sergievsky Center, Columbia University Irving Medical Center, New York,; Itzel A. Camarillo, Gertrude H. Sergievsky Center, Columbia University Irving Medical Center, New York,; Jill Goldman, Taub Institute, Columbia University Irving Medical Center, New York, NY; Wendy Uhlmann, Division of Genetic Medicine, Department of Internal Medicine and Department of Human Genetics, University of Michigan, Ann Arbor, MI; Rebecca Ferber, Department of Health Behavior and Health Education, University of Michigan School of Public Health, Ann Arbor, MI; Maria Caban, Department of Sociomedical Sciences, Columbia University Irving Medical Center, New York, NY; Cheng S. Leu, Department of Biostatistics, Columbia University Irving Medical Center, New York, NY; Ana F. Abraído-Lanza, Columbia School of Social Work, New York, NY; Rafael A. Lantigua, Department of Medicine, Columbia University Irving Medical Center, New York, NY; Wendy K. Chung, Department of Pediatrics, Boston Children’s Hospital, Harvard Medical School, Boston, MA; Scott Roberts, Department of Health Behavior and Health Education, University of Michigan School of Public Health, Ann Arbor, MI; Karolynn Siegel, Department of Sociomedical Sciences, Columbia University Irving Medical Center, New York, NY; Ruth Ottman, Gertrude H. Sergievsky Center, Columbia University Irving Medical Center, New York