Moving beyond disclosure: Stages of care in preclinical Alzheimer's disease biomarker testing.
biomarkers
disclosure
ethics and policy
preclinical Alzheimer's disease
Journal
Alzheimer's & dementia : the journal of the Alzheimer's Association
ISSN: 1552-5279
Titre abrégé: Alzheimers Dement
Pays: United States
ID NLM: 101231978
Informations de publication
Date de publication:
10 2022
10 2022
Historique:
revised:
07
01
2022
received:
05
11
2021
accepted:
11
01
2022
pubmed:
26
2
2022
medline:
21
10
2022
entrez:
25
2
2022
Statut:
ppublish
Résumé
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.
Identifiants
pubmed: 35213786
doi: 10.1002/alz.12620
pmc: PMC9402800
mid: NIHMS1773175
doi:
Substances chimiques
Biomarkers
0
Types de publication
Journal Article
Research Support, N.I.H., Extramural
Langues
eng
Sous-ensembles de citation
IM
Pagination
1969-1979Subventions
Organisme : NIH HHS
ID : NIA U24 AG057437
Pays : United States
Organisme : NIA NIH HHS
ID : U24 AG057437
Pays : United States
Organisme : NIA NIH HHS
ID : R01 AG062307
Pays : United States
Organisme : NIH HHS
ID : P30 AG062715
Pays : United States
Organisme : NIA NIH HHS
ID : RF1 AG057784
Pays : United States
Organisme : NCATS NIH HHS
ID : UL1 TR001414
Pays : United States
Organisme : NIH HHS
ID : RF1 AG057784
Pays : United States
Organisme : NIA NIH HHS
ID : P30 AG062715
Pays : United States
Organisme : NIH HHS
ID : NCATS UL1 TR001414
Pays : United States
Organisme : NIA NIH HHS
ID : R03 AG062975
Pays : United States
Organisme : NIH HHS
ID : R01 AG070883
Pays : United States
Organisme : NIA NIH HHS
ID : P30 AG066519
Pays : United States
Organisme : NIH HHS
ID : P30 AG066519
Pays : United States
Organisme : NIH HHS
ID : R01 AG054059
Pays : United States
Organisme : NIA NIH HHS
ID : RF1 AG057547
Pays : United States
Organisme : NIH HHS
ID : R03 AG062975
Pays : United States
Organisme : NIH HHS
ID : RF1 AG057547
Pays : United States
Organisme : NIA NIH HHS
ID : R01 AG070883
Pays : United States
Organisme : NIA NIH HHS
ID : R01 AG054059
Pays : United States
Organisme : NIH HHS
ID : R01AG062307
Pays : United States
Informations de copyright
© 2022 The Authors. Alzheimer's & Dementia published by Wiley Periodicals LLC on behalf of Alzheimer's Association.
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