ArticleAmerican journal of Alzheimer's disease and other dementias
Emotional reactions to predictive testing in Alzheimer's disease and other inherited dementias.
Article in American journal of Alzheimer's disease and other dementias. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT04471779 (The IDEAL Study), which is not on this map. Cited by 15 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.
The IDEAL Study: Information About Alzheimer's Disease for Latinos in New York City
Who cites it
15 citing papers in PubMed, 1 synthesis or guideline pooled it, 39 citations in OpenAlex.
- Genetic counseling and testing for Alzheimer disease: joint practice guidelines of the American College of Medical Genetics and the National Society of Genetic Counselors.Genetics in medicine : official journal of the American College of Medical Genetics · 2011Guideline
- Impact of awareness of genetic status on cognitive, behavioral, and neuropsychiatric outcomes in genetic frontotemporal dementia.Journal of neurology · 2026Article
- Evaluation of an educational conference for persons affected by hereditary frontotemporal degeneration and amyotrophic lateral sclerosis.PEC innovation · 2023Article
- Psychiatric and Psychosocial Characteristics of a Cohort of Spanish Individuals Attending Genetic Counseling Due to Risk for Genetically Conditioned Dementia.Journal of Alzheimer's disease reports · 2022Article
- Predictive testing for neurodegenerative diseases in the age of next-generation sequencing.Journal of genetic counseling · 2020Article
- Predictive Genetic Counseling for Neurodegenerative Diseases: Past, Present, and Future.Cold Spring Harbor perspectives in medicine · 2020Review
- An update on genetic frontotemporal dementia.Journal of neurology · 2019Review
- The Rationale Behind the New Alzheimer's Disease Conceptualization: Lessons Learned During the Last Decades.Journal of Alzheimer's disease : JAD · 2018Review
- Ethics of genetic and biomarker test disclosures in neurodegenerative disease prevention trials.Neurology · 2015Review
- Predictive testing for inherited prion disease: report of 22 years experience.European journal of human genetics : EJHG · 2014Article
- A review of quality of life after predictive testing for and earlier identification of neurodegenerative diseases.Progress in neurobiology · 2013Review
- "Will I get Alzheimer disease?" when cognitively normal patients ask to be tested for Alzheimer disease.Continuum (Minneapolis, Minn.) · 2013Article
- Genetic counseling for frontotemporal dementias.Journal of molecular neuroscience : MN · 2011Review
- APOE-4 genotype and neurophysiological vulnerability to Alzheimer's and cognitive aging.Annual review of clinical psychology · 2009Review
- Designing and implementing the IDEAL Study: A randomized clinical trial ofAlzheimer's & dementia (New York, N. Y.)Article
Corrections and comments
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Authors and funding
7 authors at 1 institution in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
This work describes the reasons and emotional responses of healthy descendants after counseling for presenilin mutations in early-onset familial Alzheimer's disease (EOFAD), tau mutations in familial frontotemporal dementia (FTD), and prion mutations in fatal familial insomnia (FFI). A multidisciplinary protocol following Huntington's disease counseling guidelines and a post-test follow-up program were developed to counsel healthy descendants of affected families. The psychological consequences, anxiety levels, and depression status were assessed through validated scales before and after disclosing the information. Nine people from three different families, one with EOFAD, another with FTD, and the other with FFI came for counseling. Their main reason for testing was to initiate early treatment in the future. Disclosing the information decreased anxiety in two carriers, increased it temporarily in one, and had no effect in another. All noncarriers felt relieved. Overall, after a mean of 30 months of follow-up, no negative psychological reactions were observed. All participants positively valued the program. Although preliminary, our observations suggest that predictive testing in EOFAD, FTD, and FFI is safe and may be of benefit when performed with a delicate approach under strict pretest counseling protocols and post-test follow-up programs. The emotional reactions were similar, although the diseases, their phenotype, and mutation characteristics were different.
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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.