Evidence map›Paper›PMID 39584282›Full record

ArticleMolecular genetics & genomic medicine2024

Barriers and Facilitators to Participation in Clinical Trials Related to Familial Frontotemporal Dementia: A Qualitative Study.

David Zammitt, Emilie V Brotherhood, Caroline Fearn, Caroline Greaves, Ollie Hayes, Emma Harding, Madalena Lykourgos, Jonathan D Rohrer, Josh Stott

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Molecular genetics & genomic medicine, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.

0numbers the graph read from it
0cells of the map it votes in
3citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from 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.

2 · The registry

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.

3 · Its place in the literature

Who cites it

3 citing papers in PubMed.

  1. Article
  2. Article
  3. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

9 authors.

David ZammittADAPT Lab, Department of Clinical Educational and Health Psychology, University College London, London, UK.
Emilie V BrotherhoodDementia Research Centre, University College London, London, UK.
Caroline FearnADAPT Lab, Department of Clinical Educational and Health Psychology, University College London, London, UK.
Caroline GreavesDementia Research Centre, University College London, London, UK.
Ollie HayesDementia Research Centre, University College London, London, UK.
Emma HardingDementia Research Centre, University College London, London, UK.
Madalena LykourgosDepartment of Clinical Educational and Health Psychology, University College London, London, UK.
Jonathan D RohrerDementia Research Centre, University College London, London, UK.
Josh StottADAPT Lab, Department of Clinical Educational and Health Psychology, University College London, London, UK.

Funding

JPND GENFI-PROXMiriam Marks Brain Research UK Senior FellowshipMRC Clinician Scientist FellowshipMRC UK GENFINational Institute for Health and Care ResearchNIHR Rare Disease Translational Research Collaboration
6 · The paper itself

Abstract

aimsFamilial frontotemporal dementia (fFTD) is an inherited neurodegenerative condition characterised by executive dysfunction, impairments in social cognition, behaviour and language. Although no disease-modifying interventions are currently available, several treatments are undergoing clinical trials. This study sought to understand the barriers and facilitators to taking part in such trials, as well as general perceptions of the treatments undergoing trial.

methodTwelve interviews took place with fourteen participants: eight individuals who were genetically at-risk of developing fFTD, two individuals diagnosed with fFTD and four spousal carers. Their views and experiences of clinical trials were explored using thematic analysis.

resultsFive main themes were developed: (1) effects on the individual, (2) implications for others, (3) systemic considerations, (4) the impact of genetic status and disease progression and (5) the role of communication and understanding.

conclusionsThe decision to participate in clinical trials was said to be complex, involving consideration of logistical barriers alongside health implications. Participants identified potential advantages of participating in clinical trials to be direct health benefits and the ability to help others, however risks to participants and their families' physical and psychological wellbeing were also named. Relationships between organisations and participants were consistently considered to be important, with lack of psychological care at various timepoints post diagnosis; unclear communication and expectation-setting; and inadequate organisational collaboration all identified as barriers. Participants indicated that increased health-professional interest in FTD and an associated increase in opportunities would be key facilitators for greater participation in clinical trials.

Indexed as

Clinical Trials as TopicFrontotemporal DementiaAdultAgedCaregiversFemaleHumansMaleMiddle AgedQualitative Researchclinical trialsfamilialfrontotemporal dementiapreclinicalrecruitment

Identifiers

PMID39584282
PMCPMC11586684

What OpenQuestion holds

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LicenceCC BY
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Registered trials

None linked

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.