Trial reportGenetics in medicine : official journal of the American College of Medical Genetics2018
A randomized controlled trial of disclosing genetic risk information for Alzheimer disease via telephone.
Trial report in Genetics in medicine : official journal of the American College of Medical Genetics, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT00462917 (Risk Evaluation and Education for Alzheimer's Disease), which is not on this map. Cited by 34 papers, 2 of them syntheses 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.
Risk Evaluation and Education for Alzheimer's Disease
Who cites it
34 citing papers in PubMed, 2 syntheses or guidelines pooled it, 49 citations in OpenAlex.
- The Disclosure of Bad News Over the Phone vs. in Person and its Association with Psychological Distress: a Systematic Review and Meta-Analysis.Journal of general internal medicine · 2023Pooled it
- Return of individual research results from genomic research: A systematic review of stakeholder perspectives.PloS one · 2021Pooled it
- CONNECT4 APOE: A randomized trial of telephone versus real-time two-way videoconference for disclosure of APOE genotype results in cognitively unimpaired adults.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2026Trial
- Tele-Genetic Versus Onsite Counseling for APOE Disclosure: A 6-Month Study of Empowerment, Psychological Distress, and Behavioral Outcomes in Cognitively Diverse Individuals.The journal of gene medicine · 2025Trial
- Just Semantics? How Diagnostic Criteria Influence Physician-Patient Narratives in Alzheimer's Disease.Neuro-degenerative diseases · 2026Article
- Amyloid Imaging and APOE Genotype Disclosure and Short-Term Psychological Distress.JAMA network open · 2026Article
- Now is the time: the need to update guidance to expand access toFrontiers in dementia · 2026Article
- Disclosure of onset-predictive biomarker results to research participants at risk of genetic frontotemporal dementia: a European perspective.Alzheimer's research & therapy · 2025Review
- Communicating the risk of dementia: a scoping review.BMJ neurology open · 2025Article
- Apolipoprotein E Genetic Testing in a New Age of Alzheimer Disease Clinical Practice.Neurology. Clinical practice · 2024Article
- Interest in genetic susceptibility testing and disclosure of AD dementia risk in cognitively normal adults: a survey study.Alzheimer's research & therapy · 2024Article
- The growing needs of genetic counselling-Feasibility in utilization of tele-genetic counselling in Asia and Hong Kong.Frontiers in genetics · 2023Review
- Disclosure of Genetic Risk Factors for Alzheimer's Disease to Cognitively Healthy Individuals-From Current Practice towards a Personalised Medicine Scenario.Biomedicines · 2022Review
- Do research participants share genomic screening results with family members?Journal of genetic counseling · 2022Article
- Preferences for and acceptability of receiving pharmacogenomic results by mail: A focus group study with a primarily African-American cohort.Journal of genetic counseling · 2021Article
- Virtual disclosure of preclinical Alzheimer's biomarkers: Preliminary experiences.Journal of the American Geriatrics Society · 2021Article
- Young people's moral attitudes and motivations towards direct-to-consumer genetic testing for inherited risk of Alzheimer disease.European journal of medical genetics · 2021Article
- A survey of aortic disease biorepository participants' preferences for return of research genetic results.Journal of genetic counseling · 2021Article
- Impact of a Genetic Evaluation Initiative to Increase Access to Genetic Services for Adolescent and Young Adults at a Tertiary Cancer Hospital.Journal of adolescent and young adult oncology · 2021Article
- Views on genomic research result delivery methods and informed consent: a review.Personalized medicine · 2021Review
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
15 authors at 12 institutions in 2 countries.
Funding
Abstract
PurposeTelephone disclosure of genetic test results can improve access to services. To date, studies of its impact have focused on return of Mendelian risk information, principally hereditary cancer syndromes.MethodsIn a multisite trial of Alzheimer disease genetic risk disclosure, asymptomatic adults were randomized to receive test results in person or via telephone. Primary analyses examined patient outcomes 12 months after disclosure.ResultsData from 257 participants showed that telephone disclosure occurred 7.4 days sooner and was 30% shorter, on average, than in-person disclosure (both P < 0.001). Anxiety and depression scores were well below cutoffs for clinical concern across protocols. Comparing telephone and in-person disclosure protocols, 99% confidence intervals of mean differences were within noninferiority margins on scales assessing anxiety, depression, and test-related distress, but inconclusive about positive impact. No differences were observed on measures of recall and subjective impact. Subanalyses supported noninferiority on all outcomes among apolipoprotein E (APOE) ɛ4-negative participants. Subanalyses were inconclusive for APOE ɛ4-positive participants, although mean anxiety and depression scores were still well below cutoffs for clinical concern.ConclusionTelephone disclosure of APOE results and risk for Alzheimer disease is generally safe and helps providers meet demands for services, even when results identify an increased risk for disease.
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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.