ArticleMayo Clinic proceedings2014
Public perceptions of presymptomatic testing for Alzheimer disease.
Article in Mayo Clinic proceedings, 2014. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 46 papers, 4 of them syntheses that pooled it.
What it found
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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
46 citing papers in PubMed, 4 syntheses or guidelines pooled it.
- Racial and ethnic differences in knowledge and attitudes about genetic testing in the US: Systematic review.Journal of genetic counseling · 2019Pooled it
- Clinical implications of APOE genotyping for late-onset Alzheimer's disease (LOAD) risk estimation: a review of the literature.Journal of neural transmission (Vienna, Austria : 1996) · 2019Pooled it
- Disclosure of amyloid positron emission tomography results to individuals without dementia: a systematic review.Alzheimer's research & therapy · 2018Pooled it
- Psychological, behavioral and social effects of disclosing Alzheimer's disease biomarkers to research participants: a systematic review.Alzheimer's research & therapy · 2016Pooled it
- Psychological impacts of APOE genotype disclosure among Latinos in New York City: a randomized controlled trial.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2026Trial
- Attitudes of Research Participants and the General Public Regarding Disclosure of Alzheimer Disease Research Results.JAMA neurology · 2015Trial
- Lorazepam Challenge for Individuals at Varying Genetic Risk for Alzheimer Disease.Alzheimer disease and associated disordersTrial
- Value of Knowing the Risk of Developing a Neurodegenerative Disease: A Discrete Choice Experiment.PharmacoEconomics · 2026Article
- Addressing Disparities in Alzheimer's Disease-Related Healthcare Through Understanding Factors Contributing to Perceived Vulnerability Among Latinos in Northern Manhattan: A Qualitative Report.Journal of racial and ethnic health disparities · 2026Article
- Long-term impact of disclosing amyloid PET results to individuals with subjective cognitive decline.Alzheimer's research & therapy · 2026Article
- Impact of learning APOE genotype on cognitively unimpaired adults: a pre-screening cohort study of the Alzheimer's Prevention Initiative Generation Study 1.The lancet. Healthy longevity · 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
- Interest in and Experience with Genetic Testing for Late-Onset Medical Conditions: Results from the National Poll on Healthy Aging.The journal of prevention of Alzheimer's disease · 2024Article
- Attitudes of Family Members and Caregivers Regarding Alzheimer's Disease Pre-Symptomatic Screening.Journal of Alzheimer's disease reports · 2024Article
- Research Participants' Perspectives on Precision Diagnostics 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
- Remote data collection speech analysis in people at risk for Alzheimer's disease dementia: usability and acceptability results.Frontiers in dementia · 2023Article
- Attitudes toward pre-symptomatic screening for Alzheimer's dementia in five European countries: a comparison of family members of people with Alzheimer's dementiaFrontiers in genetics · 2023Article
- Disclosure of Genetic Risk Factors for Alzheimer's Disease to Cognitively Healthy Individuals-From Current Practice towards a Personalised Medicine Scenario.Biomedicines · 2022Review
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
8 authors.
Funding
Abstract
objectiveTo explore the self-expressed desire for, envisioned reaction to, and basic understanding of presymptomatic Alzheimer disease (AD)-related genetic and biomarker tests. PATIENTS AND
methodsThe Alzheimer's Prevention Registry is an online community of people at least 18 years of age who are interested in AD prevention research for purely informational purposes or to be considered for possible research participation in future studies. Information about presymptomatic testing and an online multiple choice format survey were posted from November 1, 2012, through June 20, 2013, on the registry website.
resultsOf 4036 respondents, 80.8% (3195/3952) wanted genetic testing if paid by insurance and 58.7% (2261/3851) if it would cost them at least $100. A total of 80.2% (3112/3879) wanted biomarker testing. If at high risk for AD, 90.5% (3478/3841) endorsed that they would "pursue a healthier lifestyle," but 11.6% (427/3706) endorsed "seriously consider suicide." The implication of a positive genetic test result was incorrectly understood by 13.1% (500/3812) and 32.6% (1255/3848) failed to view a positive biomarker test result as evidence of increased risk for or the presence of AD.
conclusionDespite efforts to increase public awareness of AD, our survey results suggest that greater education of the public is needed. Interested patients should probably undergo psychological screening to identify those at high risk of adverse psychological outcomes, and disclosure of presymptomatic test results should be anchored to tangible constructive action plans, such as healthy lifestyle changes, long-term care planning, and, when available and appropriate, participation in research trials.
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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.