ArticleJournal of Alzheimer's disease : JAD2022
Disclosing Individual Results in Dementia Research: A Proposed Study Participant's Bill of Rights.
Article in Journal of Alzheimer's disease : JAD, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 26 papers.
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
26 citing papers in PubMed.
- Just Semantics? How Diagnostic Criteria Influence Physician-Patient Narratives in Alzheimer's Disease.Neuro-degenerative diseases · 2026Article
- No cognitive or psychological impact from returning research Alzheimer disease biomarkers: A delayed-start, noninferiority, randomized clinical trial.medRxiv : the preprint server for health sciences · 2026Article
- Article
- Recommended approaches to sharing individual research results in Alzheimer's disease research: A multidisciplinary expert Delphi consensus.Journal of Alzheimer's disease : JAD · 2025Article
- 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
- Return of research results across the Alzheimer's Disease Research Centers network.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2025Article
- Moving from dementia risk disclosure to return of individual research results: a bioethics perspective.The lancet. Healthy longevity · 2025Article
- Research Participant Interest in Learning Results of Biomarker Tests for Alzheimer Disease.JAMA network open · 2025Observational
- Genetic and biomarker disclosure process in a memory and aging study.Journal of Alzheimer's disease : JAD · 2025Article
- Public and participant involvement as a pathway to inclusive dementia research.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2025Article
- The Consortium for Clarity in ADRD Research Through Imaging (CLARiTI).Alzheimer's & dementia : the journal of the Alzheimer's Association · 2025Review
- "Make research more people-centered": Two ADNI participants share recommendations for more inclusive Alzheimer's disease research.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2024Article
- National Institute on Aging's 50th Anniversary: Advancing Cognitive Aging Research and the Cognitive Health of Older Adults.The journals of gerontology. Series B, Psychological sciences and social sciences · 2024Article
- A Pragmatic, Investigator-Driven Process for Disclosure of Amyloid PET Scan Results to ADNI-4 Research Participants.The journal of prevention of Alzheimer's disease · 2024Article
- From palm to practice: prescription digital therapeutics for mental and brain health at the National Institutes of Health.Frontiers in psychiatry · 2024Article
- The AlzMatch Pilot Study - Feasibility of Remote Blood Collection of Plasma Biomarkers for Preclinical Alzheimer's Disease Trials.The journal of prevention of Alzheimer's disease · 2024Article
- The Return of Biomarker Results in Research: Balancing Complexity, Precision, and Ethical Responsibility.Journal of Alzheimer's disease : JAD · 2024Review
- Communicating and Using Dementia Risk Evidence.Journal of Alzheimer's disease : JAD · 2022Article
- Feasibility of virtual Alzheimer's biomarker disclosure: Findings from an observational cohort.Alzheimer's & dementia (New York, N. Y.)Article
- A service-oriented approach to clinical trial recruitment for dementia and brain health: Methods and case examples of MyAlliance for Brain Health.Alzheimer's & dementia (New York, N. Y.)Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
9 authors.
Funding
Abstract
This Study Participant's Bill of Rights is a call to action for researchers in Alzheimer's disease and related dementias (ADRD) to proactively design clinical studies that provide the option for research participants to learn their individual research results if they choose, and in a manner that ensures study integrity. This Bill of Rights was crafted by a committee of study participants, care partners, representatives of dementia advocacy organizations, and other stakeholders in dementia research for the Advisory Group on Risk Education for Dementia (AGREEDementia). The framework developed by the Multi-Regional Clinical Trials (MRCT) Return of Individual Research Results provides a useful context for researchers to plan their studies and disclosure.
Indexed as
Identifiers
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.