Reactions to gene and biomarker results: The SOKRATES Studies
As Alzheimer’s disease (AD) secondary prevention trials require participants to undergo genetic or biomarker testing in order to enroll, researchers must address how to disclose the results of tests that foreshadow whether a healthy person may develop AD dementia as well as the implications of these disclosures. As interventions to prevent or delay symptoms move from research to clinical practice, so will these challenges surrounding disclosure.
Through research that includes the SOKRATES 1 (Study of Knowledge and Reactions to Amyloid TESting) and SOKRATES 2 (Study of Knowledge and Reactions to APOE TESting) studies, P3MB researchers are collecting data to understand the experiences of cognitively unimpaired individuals who learn the results of AD gene and biomarker tests. Topics explored include individuals’ emotional reactions to these results, including any psychological or emotional challenges, any changes in their relationships and sense of self, their health behaviors, and how they are thinking about and planning for the future.
To learn more about what we’re discovering:
Harkins K, Sankar P, Sperling R, et al. Development of a process to disclose amyloid imaging results to cognitively normal older adult research participants. Alz Res Ther. 2015;7:26.
Mozersky J, Sankar P, Harkins K, Hachey S, Karlawish J. Comprehension of an elevated amyloid positron emission tomography biomarker result by cognitively normal older adults. JAMA Neurol. 2018;75(1):44-50.
Harkins K. & Karlawish J. Disclosing amyloid status to a person without cognitive impairments: Anticipating a novel clinical practice. Practical Neurology, June 2018. http://practicalneurology.com/2018/06/disclosing-amyloid-status-to-a-person-without-cognitive-impairments/
Grill JD, Cox CG, Harkins K, Karlawish J. Reactions to learning a “not elevated” amyloid PET result in a preclinical Alzheimer’s disease trial. Alzheimers Res Ther. 2018 Dec 22;10(1):125. doi: 10.1186/s13195-018-0452-1.