ArticleJournal of genetic counseling2009
A decade of genetic counseling in frontotemporal dementia affected families: few counseling requests and much familial opposition to testing.
Article in Journal of genetic counseling, 2009. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 12 papers, 1 of them a synthesis 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
12 citing papers in PubMed, 1 synthesis or guideline pooled it, 28 citations in OpenAlex.
- Genetic counseling and testing practices for late-onset neurodegenerative disease: a systematic review.Journal of neurology · 2022Pooled it
- Reasons for and against presymptomatic genetic testing in frontotemporal dementia: a qualitative study.Human genetics · 2026Article
- Deciding on genetic testing for familial dementia: Perspectives of patients and families.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2025Article
- Genetic Counselling Improves the Molecular Characterisation of Dementing Disorders.Journal of personalized medicine · 2021Review
- Genetic counselling and testing for inherited dementia: single-centre evaluation of the consensus Italian DIAfN protocol.Alzheimer's research & therapy · 2020Article
- Classification using fractional anisotropy predicts conversion in genetic frontotemporal dementia, a proof of concept.Brain communications · 2020Article
- The Effect of Predictive Testing in Adult-Onset Neurodegenerative Diseases on Social and Personal Life.Journal of genetic counseling · 2018Article
- Ethical issues in neurogenetics.Handbook of clinical neurology · 2018Review
- A review of quality of life after predictive testing for and earlier identification of neurodegenerative diseases.Progress in neurobiology · 2013Review
- Frontotemporal lobar degeneration: current knowledge and future challenges.Journal of neurology · 2012Review
- Genetic counseling for frontotemporal dementias.Journal of molecular neuroscience : MN · 2011Review
- Are we studying and treating schizophrenia correctly?Schizophrenia research · 2011Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
4 authors at 3 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
A decade of genetic counseling of frontotemporal dementia (FTD) affected families has generated two important observations. First, the uptake rate for presymptomatic testing for FTD is low in our department of Clinical Genetics at the Erasmus Medical Center in the Netherlands. Second, FTD at-risk counselees reported substantial familial opposition to genetic testing, which is distinct from the attitude in Huntington Disease affected families. We hypothesize that the low acceptance for FTD genetic counseling is consequential to the familial opposition and explain this within the theoretical framework of separation-individuation. Furthermore, we hypothesize that separation-individuation problems do not similarly influence the acceptance of HD genetic counseling, due to the educative role of the well-organised patient organization for HD in the Netherlands. We offer counseling recommendations that serve to facilitate the individuation of the counselee with respect to the FTD genetic test.
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.