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Moving beyond disclosure: Stages of care in preclinical Alzheimer's disease biomarker testing
Journal article   Peer reviewed

Moving beyond disclosure: Stages of care in preclinical Alzheimer's disease biomarker testing

Fred B Ketchum, Nathaniel A Chin, Joshua Grill, Carey E Gleason, Claire Erickson, Lindsay R Clark, Jane S Paulsen and Amy J H Kind
Alzheimer's & dementia, Vol.18(10), pp.1969-1979
10/2022
DOI: 10.1002/alz.12620
PMCID: PMC9402800
PMID: 35213786

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Abstract

Alzheimer's disease (AD) begins with an asymptomatic "preclinical" phase, in which abnormal biomarkers indicate risk for developing cognitive impairment. Biomarker information is increasingly being disclosed in research settings, and is moving toward clinical settings with the development of cheaper and non-invasive testing. Limited research has focused on the safety and psychological effects of disclosing biomarker results to cognitively unimpaired adults. However, less is known about how to ensure equitable access and robust counseling for decision-making before testing, and how to effectively provide long-term follow-up and risk management after testing. Using the framework of Huntington's disease, which is based on extensive experience with disclosing and managing risk for a progressive neurodegenerative condition, this article proposes a conceptual model of pre-disclosure, disclosure, and post-disclosure phases for AD biomarker testing. Addressing research questions in each phase will facilitate the transition of biomarker testing into clinical practice.
Alzheimer Disease - diagnosis Alzheimer Disease - psychology Alzheimer Disease - therapy Biomarkers Cognitive Dysfunction - psychology Disclosure Humans

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