ArticleJournal of Alzheimer's disease : JAD2021
Communicating 5-Year Risk of Alzheimer's Disease Dementia: Development and Evaluation of Materials that Incorporate Multiple Genetic and Biomarker Research Results.
Article in Journal of Alzheimer's disease : JAD, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 19 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.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
19 citing papers in PubMed, 2 syntheses or guidelines pooled it, 19 citations in OpenAlex.
- Ethical issues in genomics research in persons with Alzheimer's Disease/Alzheimer's Disease-related dementia (AD/ADRD): a systematic review.BMC medical ethics · 2024Pooled it
- Return of individual research results from genomic research: A systematic review of stakeholder perspectives.PloS one · 2021Pooled it
- Just Semantics? How Diagnostic Criteria Influence Physician-Patient Narratives in Alzheimer's Disease.Neuro-degenerative diseases · 2026Article
- Article
- Return of results is important to heterogeneous research participants: A single-site survey.Journal of clinical and translational science · 2026Article
- Research Participant Interest in Learning Results of Biomarker Tests for Alzheimer Disease.JAMA network open · 2025Observational
- Communicating the risk of dementia: a scoping review.BMJ neurology open · 2025Article
- Double-Edged Sword: A Positive Brain Scan Result Heightens Confidence in an Alzheimer's Diagnosis But Also Leads to Higher Stigma Among Older Adults in a Vignette-Based Experiment.The journals of gerontology. Series B, Psychological sciences and social sciences · 2024Article
- Research Participants' Perspectives on Precision Diagnostics for Alzheimer's Disease.Journal of Alzheimer's disease : JAD · 2024Article
- The Return of Biomarker Results in Research: Balancing Complexity, Precision, and Ethical Responsibility.Journal of Alzheimer's disease : JAD · 2024Review
- Informing Disclosure: Efficacy of a Brief Educational Intervention on Research Participants' Knowledge about Alzheimer's Disease Biomarkers.Journal of Alzheimer's disease : JAD · 2023Article
- Retention of Study Partners in Longitudinal Studies of Alzheimer Disease.Journal of Alzheimer's disease : JAD · 2023Article
- Moving beyond disclosure: Stages of care in preclinical Alzheimer's disease biomarker testing.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2022Article
- Spillover: The Approval of New Medications for Alzheimer's Disease Dementia Will Impact Biomarker Disclosure Among Asymptomatic Research Participants.Journal of Alzheimer's disease : JAD · 2022Review
- Disclosure of individual research results at federally funded Alzheimer's Disease Research Centers.Alzheimer's & dementia (New York, N. Y.) · 2021Article
- Developing educational materials to aid in Alzheimer's blood biomarker disclosure.Alzheimer's & dementia (New York, N. Y.)Article
- Personal value of Alzheimer's disease biomarker testing and result disclosure from the patient and care partner perspective.Alzheimer's & dementia (New York, N. Y.)Article
- The importance of the dyad: Participant perspectives on sharing biomarker results in Alzheimer's disease research.Alzheimer's & dementia (New York, N. Y.)Article
- Alzheimer Disease Biomarkers in Clinical Practice: A Blood-Based Diagnostic Revolution.Journal of primary care & community healthReview
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 at 2 institutions in 1 country.
Funding
Abstract
backgroundCognitively normal (CN) older adults participating in Alzheimer's disease (AD) research increasingly ask for their research results-including genetic and neuroimaging findings-to understand their risk of developing AD dementia. AD research results are typically not returned for multiple reasons, including possible psychosocial harms of knowing one is at risk of a highly feared and untreatable disease.
objectiveWe developed materials that convey information about 5-year absolute risk of developing AD dementia based on research results.
methods20 CN older adults who received a research brain MRI result were interviewed regarding their wishes for research results to inform material development (Pilot 1). Following material development, 17 CN older adults evaluated the materials for clarity and acceptability (Pilot 2). All participants were community-dwelling older adults participating in longitudinal studies of aging at a single site.
resultsParticipants want information on their risk of developing AD dementia to better understand their own health, satisfy curiosity, inform family, and future planning. Some articulated concerns, but the majority wanted to know their risk despite the limitations of information. Participants found the educational materials and results report clear and acceptable, and the majority would want to know their research results after reviewing them.
conclusionThese materials will be used in a clinical study examining the psychosocial and cognitive effects of offering research results to a cohort of CN older adults. Future AD research may incorporate the return of complex risk information to CN older adults, and materials are needed to communicate this information.
Indexed as
Identifiers
What Socratic 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 Socratic graph.