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

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 ch...

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Autores principales: Ketchum, Fred B., Chin, Nathaniel A., Grill, Joshua, Gleason, Carey E., Erickson, Claire, Clark, Lindsay R., Paulsen, Jane S., Kind, Amy J.H.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: John Wiley and Sons Inc. 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9402800/
https://www.ncbi.nlm.nih.gov/pubmed/35213786
http://dx.doi.org/10.1002/alz.12620
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author Ketchum, Fred B.
Chin, Nathaniel A.
Grill, Joshua
Gleason, Carey E.
Erickson, Claire
Clark, Lindsay R.
Paulsen, Jane S.
Kind, Amy J.H.
author_facet Ketchum, Fred B.
Chin, Nathaniel A.
Grill, Joshua
Gleason, Carey E.
Erickson, Claire
Clark, Lindsay R.
Paulsen, Jane S.
Kind, Amy J.H.
author_sort Ketchum, Fred B.
collection PubMed
description 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.
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spelling pubmed-94028002022-12-28 Moving beyond disclosure: Stages of care in preclinical Alzheimer's disease biomarker testing Ketchum, Fred B. Chin, Nathaniel A. Grill, Joshua Gleason, Carey E. Erickson, Claire Clark, Lindsay R. Paulsen, Jane S. Kind, Amy J.H. Alzheimers Dement Perspectives 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. John Wiley and Sons Inc. 2022-02-25 2022-10 /pmc/articles/PMC9402800/ /pubmed/35213786 http://dx.doi.org/10.1002/alz.12620 Text en © 2022 The Authors. Alzheimer's & Dementia published by Wiley Periodicals LLC on behalf of Alzheimer's Association https://creativecommons.org/licenses/by-nc-nd/4.0/This is an open access article under the terms of the http://creativecommons.org/licenses/by-nc-nd/4.0/ (https://creativecommons.org/licenses/by-nc-nd/4.0/) License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non‐commercial and no modifications or adaptations are made.
spellingShingle Perspectives
Ketchum, Fred B.
Chin, Nathaniel A.
Grill, Joshua
Gleason, Carey E.
Erickson, Claire
Clark, Lindsay R.
Paulsen, Jane S.
Kind, Amy J.H.
Moving beyond disclosure: Stages of care in preclinical Alzheimer's disease biomarker testing
title Moving beyond disclosure: Stages of care in preclinical Alzheimer's disease biomarker testing
title_full Moving beyond disclosure: Stages of care in preclinical Alzheimer's disease biomarker testing
title_fullStr Moving beyond disclosure: Stages of care in preclinical Alzheimer's disease biomarker testing
title_full_unstemmed Moving beyond disclosure: Stages of care in preclinical Alzheimer's disease biomarker testing
title_short Moving beyond disclosure: Stages of care in preclinical Alzheimer's disease biomarker testing
title_sort moving beyond disclosure: stages of care in preclinical alzheimer's disease biomarker testing
topic Perspectives
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9402800/
https://www.ncbi.nlm.nih.gov/pubmed/35213786
http://dx.doi.org/10.1002/alz.12620
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