ArticleAlzheimer's & dementia (New York, N. Y.)2016
A Survey of Knowledge and Views Concerning Genetic and Amyloid PET Status Disclosure.
Article in Alzheimer's & dementia (New York, N. Y.), 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 32 papers, 1 of them a synthesis that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
32 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Disclosure of amyloid positron emission tomography results to individuals without dementia: a systematic review.Alzheimer's research & therapy · 2018Pooled it
- Just Semantics? How Diagnostic Criteria Influence Physician-Patient Narratives in Alzheimer's Disease.Neuro-degenerative diseases · 2026Article
- The use of religion, prayer, and faith to cope with the receipt of Alzheimer's disease risk information in a research context: A qualitative study of Latinos in NYC.SSM. Qualitative research in health · 2026Article
- Long-term impact of disclosing amyloid PET results to individuals with subjective cognitive decline.Alzheimer's research & therapy · 2026Article
- Recommended approaches to sharing individual research results in Alzheimer's disease research: A multidisciplinary expert Delphi consensus.Journal of Alzheimer's disease : JAD · 2025Article
- Communicating the risk of dementia: a scoping review.BMJ neurology open · 2025Article
- Interest in genetic susceptibility testing and disclosure of AD dementia risk in cognitively normal adults: a survey study.Alzheimer's research & therapy · 2024Article
- Views and Perceptions of Amyloid Imaging in a Preclinical Alzheimer's Disease Trial.The journal of prevention of Alzheimer's disease · 2024Article
- Understanding Health Beliefs and Health Behaviors in Older Adults at Risk for Alzheimer's Disease.Journal of Alzheimer's disease : JAD · 2024Article
- Validation of the "Perceptions Regarding pRE-Symptomatic Alzheimer's Disease Screening" (PRE-ADS) Questionnaire in the German Population: Attitudes, Motivations, and Barriers to Pre-Symptomatic Dementia Screening.Journal of Alzheimer's disease : JAD · 2024Article
- Analysis of Psychological Symptoms Following Disclosure of Amyloid-Positron Emission Tomography Imaging Results to Adults With Subjective Cognitive Decline.JAMA network open · 2023Article
- US Adults' Likelihood to Participate in Dementia Prevention Drug Trials: Results from the National Poll on Healthy Aging.The journal of prevention of Alzheimer's disease · 2023Article
- Remote data collection speech analysis in people at risk for Alzheimer's disease dementia: usability and acceptability results.Frontiers in dementia · 2023Article
- Anticipated reactions to learning Alzheimer's disease biomarker results.Alzheimer's research & therapy · 2022Article
- Disclosing Individual Results in Dementia Research: A Proposed Study Participant's Bill of Rights.Journal of Alzheimer's disease : JAD · 2022Article
- What Influences the Willingness of Blacks and African Americans to Enroll in Preclinical Alzheimer's Disease Biomarker Research? A Qualitative Vignette Analysis.Journal of Alzheimer's disease : JAD · 2022Article
- Dementia risk communication. A user manual for Brain Health Services-part 3 of 6.Alzheimer's research & therapy · 2021Review
- Pilot study of an Alzheimer's disease risk assessment program in a primary care setting.Alzheimer's & dementia (Amsterdam, Netherlands) · 2021Article
- Disclosure of individual research results at federally funded Alzheimer's Disease Research Centers.Alzheimer's & dementia (New York, N. Y.) · 2021Article
- Disclosure of preclinical Alzheimer's disease biomarker results in research and clinical settings: Why, how, and what we still need to know.Alzheimer's & dementia (Amsterdam, Netherlands) · 2021Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
4 authors.
Funding
Abstract
introductionThis survey characterizes viewpoints of cognitively intact at-risk participants in an Alzheimer prevention registry if given the opportunity to learn their genetic and amyloid PET status.
methods207 participants were offered a 25-item survey. They were asked if they wished to know their ApoE and amyloid PET status, and if so, reasons for wanting to know, or not, and the effects of such information on life plans.
results164 (79.2%) of registrants completed the survey. Among those who were unaware of their ApoE or amyloid PET results, 80% desired to know this information. The most common reasons for wanting disclosure were to participate in research, to arrange personal affairs, to prepare family for illness, and to move life plans closer into the future. When asked if disclosure would help with making plans to end one's life when starting to lose their memory, 12.7% vs. 11.5% responded yes for ApoE and amyloid PET disclosures, respectively. Disclosure of these test results, if required for participation in a clinical trial, would make 15% of people less likely to participate. Likelihood of participation in prevention research and the desire to know test results were not related to scores on brief tests of knowledge about the tests. DISCUSSION: These results suggest that stakeholders in AD prevention research generally wish to know biological test information about their risk for developing AD to assist in making life plans.
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What OpenQuestion holds
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.