Observational studyAlzheimer's & dementia : the journal of the Alzheimer's Association2016
Ethical challenges in preclinical Alzheimer's disease observational studies and trials: Results of the Barcelona summit.
Observational study in Alzheimer's & dementia : the journal of the Alzheimer's Association, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 32 papers, 3 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
32 citing papers in PubMed, 3 syntheses or guidelines pooled it.
- 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
- The full spectrum of ethical issues in dementia research: findings of a systematic qualitative review.BMC medical ethics · 2021Pooled it
- Disclosure of amyloid positron emission tomography results to individuals without dementia: a systematic review.Alzheimer's research & therapy · 2018Pooled it
- Considerations for therapeutic targets for clinical trials in biomarker-characterized prodromal Parkinson's disease populations.Journal of Parkinson's disease · 2026Article
- Research satisfaction among participants in a preclinical Alzheimer's disease trial.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2026Article
- Just Semantics? How Diagnostic Criteria Influence Physician-Patient Narratives in Alzheimer's Disease.Neuro-degenerative diseases · 2026Article
- Patient views on blood-based biomarker tests for Alzheimer's disease in primary care.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2026Article
- Ethical challenges in the clinical translation of anti-amyloid monoclonal antibodies for Alzheimer's disease: a scoping review.Frontiers in psychiatry · 2026Review
- Biologics as Therapeutical Agents Under Perspective Clinical Studies for Alzheimer's Disease.Molecules (Basel, Switzerland) · 2025Review
- Informing Alzheimer's Biomarker Communication: Concerns and Understanding of Cognitively Unimpaired Adults During Amyloid Results Disclosure.The journal of prevention of Alzheimer's disease · 2024Article
- Biomarkers of aging.Science China. Life sciences · 2023Review
- "I Want to Know Everything ... ": The Return of Research Results and the Importance of Transparency in the Acceptability of Lumbar Punctures for African American Older Adults.Journal of Alzheimer's disease : JAD · 2023Article
- Preclinical Alzheimer's dementia: a useful concept or another dead end?European journal of ageing · 2022Review
- Article
- 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
- Societal and equity challenges for Brain Health Services. A user manual for Brain Health Services-part 6 of 6.Alzheimer's research & therapy · 2021Review
- Ethical Considerations in Communicating Alzheimer's Disease Neuroimaging Biomarker Test Results to Symptomatic Individuals.Neurotherapeutics : the journal of the American Society for Experimental NeuroTherapeutics · 2021Review
- Communicating 5-Year Risk of Alzheimer's Disease Dementia: Development and Evaluation of Materials that Incorporate Multiple Genetic and Biomarker Research Results.Journal of Alzheimer's disease : JAD · 2021Article
- Addressing ethical challenges of disclosure in dementia prediction: limitations of current guidelines and suggestions to proceed.BMC medical ethics · 2020Article
- Informed consent, therapeutic misconception, and clinical trials for Alzheimer's disease.International journal of geriatric psychiatry · 2020Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
13 authors.
Funding
Abstract
Alzheimer's disease (AD) is among the most significant health care burdens. Disappointing results from clinical trials in late-stage AD persons combined with hopeful results from trials in persons with early-stage suggest that research in the preclinical stage of AD is necessary to define an optimal therapeutic success window. We review the justification for conducting trials in the preclinical stage and highlight novel ethical challenges that arise and are related to determining appropriate risk-benefit ratios and disclosing individuals' biomarker status. We propose that to conduct clinical trials with these participants, we need to improve public understanding of AD using unified vocabulary, resolve the acceptable risk-benefit ratio in asymptomatic participants, and disclose or not biomarker status with attention to study type (observational studies vs clinical trials). Overcoming these challenges will justify clinical trials in preclinical AD at the societal level and aid to the development of societal and legal support for trial participants.
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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.