ArticleNeurology2013
Using AD biomarker research results for clinical care: a survey of ADNI investigators.
Article in Neurology, 2013. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 22 papers, 1 of them a synthesis 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
22 citing papers in PubMed, 1 synthesis or guideline pooled it, 43 citations in OpenAlex.
- Disclosure of amyloid positron emission tomography results to individuals without dementia: a systematic review.Alzheimer's research & therapy · 2018Pooled it
- Impact of patient involvement on clinical practice guideline development: a parallel group study.Implementation science : IS · 2018Trial
- Attitudes of Research Participants and the General Public Regarding Disclosure of Alzheimer Disease Research Results.JAMA neurology · 2015Trial
- Communicating the risk of dementia: a scoping review.BMJ neurology open · 2025Article
- Counseling and disclosure practices in predictive Alzheimer's disease diagnostics: A scoping review.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2024Article
- Alzheimer's Disease Biomarker Decision-Making among Patients with Mild Cognitive Impairment and Their Care Partners.The journal of prevention of Alzheimer's disease · 2024Article
- Moving beyond disclosure: Stages of care in preclinical Alzheimer's disease biomarker testing.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2022Article
- Disclosure of preclinical Alzheimer's disease biomarker results in research and clinical settings: Why, how, and what we still need to know.Alzheimer's & dementia (Amsterdam, Netherlands) · 2021Article
- Participation and consultation engagement strategies have complementary roles: A case study of patient and public involvement in clinical practice guideline development.Health expectations : an international journal of public participation in health care and health policy · 2020Article
- Ethical Issues Posed by Field Research Using Highly Portable and Cloud-Enabled Neuroimaging.Neuron · 2020Review
- Article
- Comprehension of an Elevated Amyloid Positron Emission Tomography Biomarker Result by Cognitively Normal Older Adults.JAMA neurology · 2018Article
- Patient and caregiver reactions to clinical amyloid imaging.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2017Article
- Huntington Disease: The Complexities of Making and Disclosing a Clinical Diagnosis After Premanifest Genetic Testing.Tremor and other hyperkinetic movements (New York, N.Y.) · 2017Article
- Amnestic MCI Patients' Perspectives toward Disclosure of Amyloid PET Results in a Research Context.Neuroethics · 2017Article
- A Survey of Knowledge and Views Concerning Genetic and Amyloid PET Status Disclosure.Alzheimer's & dementia (New York, N. Y.) · 2016Article
- Genetic studies of quantitative MCI and AD phenotypes in ADNI: Progress, opportunities, and plans.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2015Review
- 2014 Update of the Alzheimer's Disease Neuroimaging Initiative: A review of papers published since its inception.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2015Review
- The influence of cerebrospinal fluid (CSF) biomarkers on clinical dementia evaluations.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2015Article
- Development of a process to disclose amyloid imaging results to cognitively normal older adult research participants.Alzheimer's research & therapy · 2015Article
Corrections and comments
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Authors and funding
4 authors at 2 institutions in 1 country.
Funding
Abstract
objectiveTo inform whether the Alzheimer's Disease Neuroimaging Initiative (ADNI) should change its policy of not returning research results to ADNI participants, we surveyed investigators and research staff about disclosing ADNI biomarker information to research participants, with particular emphasis on amyloid imaging results.
methodsIn April 2012, just before Food and Drug Administration approval of the amyloid-binding radiotracer, florbetapir, all ADNI investigators and personnel were recruited to complete an anonymous online survey that contained fixed choice and free-text questions.
resultsAlthough ADNI participants often requested amyloid imaging results (the proportions of investigators who reported requests from more than half of their participants with normal cognition or mild cognitive impairment were 20% and 22%, respectively), across all diagnostic groups, the majority of ADNI investigators (approximately 90%) did not return amyloid imaging results to ADNI participants. However, the majority of investigators reported that, if the Food and Drug Administration approved florbetapir, they would support the return of amyloid imaging results to participants with mild cognitive impairment and normal cognition, but they emphasized the need for guidance on how to provide these results to participants and for research to assess the value of returning results as well as how returning results will affect study validity and participant well-being.
conclusionsA majority of ADNI investigators support returning amyloid imaging results to ADNI participants. The findings that they want guidance on how to do this and research on the impact of disclosure suggest how to develop and monitor a disclosure process.
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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.