ArticleThe journal of prevention of Alzheimer's disease2024
A Pragmatic, Investigator-Driven Process for Disclosure of Amyloid PET Scan Results to ADNI-4 Research Participants.
Article in The journal of prevention of Alzheimer's disease, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 13 papers.
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Who cites it
13 citing papers in PubMed, 12 citations in OpenAlex.
- No cognitive or psychological impact from returning research Alzheimer disease biomarkers: A delayed-start, noninferiority, randomized clinical trial.medRxiv : the preprint server for health sciences · 2026Article
- Expert consensus on communicating tau PET results to persons living with MCI or dementia: Findings from a modified Delphi study.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2026Article
- Diagnostic value of saccades in mild cognitive impairment: a community-based study.The journals of gerontology. Series A, Biological sciences and medical sciences · 2026Article
- Article
- Toward a person-centered return of research results of dementia risk: A pluralistic, constructive expansion.Journal of Alzheimer's disease : JAD · 2025Article
- Return of research results across the Alzheimer's Disease Research Centers network.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2025Article
- Ethical disclosure of biomarkers for Alzheimer risk in Latin American participants.Frontiers in dementia · 2025Article
- Paving the way for Alzheimer's disease blood-based biomarkers in primary care.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2025Review
- Overview of Alzheimer's Disease Neuroimaging Initiative and future clinical trials.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2025Review
- Communicating the risk of dementia: a scoping review.BMJ neurology open · 2025Article
- The Alzheimer's Disease Neuroimaging Initiative-4 (ADNI-4) Engagement Core: A culturally informed, community-engaged research (CI-CER) model to advance brain health equity.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2024Article
- Counseling and disclosure practices in predictive Alzheimer's disease diagnostics: A scoping review.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2024Article
- The ADNI PET Core at 20.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2024Review
Corrections and comments
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Authors and funding
11 authors at 8 institutions in 1 country.
Funding
Abstract
backgroundPrior studies of Alzheimer's disease (AD) biomarker disclosure have answered important questions about individuals' safety after learning and comprehending their amyloid PET results; however, these studies have typically employed highly structured disclosure protocols and focused on the psychological impact of disclosure (e.g., anxiety, depression, and suicidality) in homogeneous populations. More work is needed to develop flexible disclosure protocols and study outcomes in ethnoculturally representative samples.
methodsThe Alzheimer's Disease Neuroimaging Initiative (ADNI) is formally incorporating amyloid PET disclosure into the newest protocol (ADNI-4). Participants across the cognitive spectrum who wish to know their amyloid PET results may learn them. The pragmatic disclosure process spans four timepoints: (1) a pre-disclosure visit, (2) the PET scan and its read, (3) a disclosure visit, and (4) a post-disclosure check-in. This process applies to all participants, with slight modifications to account for their cognitive status. In designing this process, special emphasis was placed on utilizing investigator discretion. Participant measures include perceived risk of dementia, purpose in life, and disclosure satisfaction. Investigator assessment of the disclosure visit (e.g., challenges encountered, topics discussed, etc.) is also included.
resultsData collection is ongoing. Results will allow for more robust characterization of the impact of learning amyloid PET results on individuals and describe the perspectives of investigators.
conclusionThe pragmatic design of the disclosure process in ADNI-4 coupled with the novel participant and investigator data will inform future disclosure practices. This is especially important as disclosure of biomarker results expands in research and care.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.