Project Description
The Precision Medicine for Alzheimer’s Disease and Related Dementias Project is a joint project conducted in collaboration with the Center for Alzheimer’s and Neurodegenerative Disease at Baylor College of Medicine. This project aims to integrate precision medicine (cognitive testing, genomic testing, and neuroimaging) into Alzheimer’s research and care to increase early detection of ADRD and improve clinical outcomes. In this project, at-risk patient-participants enroll together with study partners (potential caregivers) to receive cognitive testing, genetic testing, and neuroimaging (MRI, PET), and a comprehensive profile of their risk of developing ADRD. In conjunction with CAND, the Center for Medical Ethics and Health policy is assessing the impact of precision medicine testing and disclosure on both patient-participants and their potential caregivers in order to facilitate ethical and effective implementation of precision medicine disclosure.
The AD Project is enrolling 250 patient-participants and their study partners in the Houston area. The diverse settings of the study allow us to evaluate the impact of precision medicine on a diverse community, including both English and Spanish-speaking populations.
We are exploring impact across a variety of dimensions including:
- Attitudes towards different testing modalities, and the perceived relative importance of different test results for future planning.
- Psychological impact of testing, including both patient-participant and study partner worry and self-efficacy around test results, as well as the effects of disclosure of patient-participant results on study partner burden.
- How results are actually used to improve patient-participant health behaviors for the purposes of improving ADRD outcomes.
Patient-participants and study partners complete pre-disclosure surveys to assess their expectations around results prior to receiving them. At follow-up, both patient-participants and study partners provide information about their understanding of and reaction to their results. Study partners also provide information about their caregiver burden and gains in dementia caregiving.
Supported by: a private foundation
Project Team
Publications
Stevens Smith et al., Research participants' perspectives on precision diagnostics for Alzheimer's disease, Journal of Alzheimer’s Disease
Presentation
Levchenko et al., Impact of Precision Medicine on Patient and Caregiver Perceptions of Alzheimer’s Disease. American Society for Bioethics and Humanities Annual Conference. October 2023.
