GENFI-NeuroDev
Research type
Research Study
Full title
The Genetic Frontotemporal dementia Initiative study of Neurodevelopment (GENFI-NeuroDev)
IRAS ID
351016
Contact name
Jonathan Rohrer
Contact email
Sponsor organisation
University College London (UCL)
Clinicaltrials.gov Identifier
182653, Edge Reference Number
Duration of Study in the UK
3 years, 0 months, 1 days
Research summary
Frontotemporal dementia (FTD) is a type of dementia that often affects people at a younger age than other forms of dementia. In some families, FTD is caused by changes (mutations) in certain genes that can be passed down from parents to children, referred to as genetic FTD. Around one in three people with FTD have a genetic form of the condition, and the most common genes involved are called C9orf72, GRN, and MAPT.
Recent research suggests that changes in the brain may begin many years before a person shows any symptoms of FTD. Brain scans have shown that some parts of the brain may become smaller or develop differently. These changes have even been seen people who carry a genetic change but do not have any symptoms as early as young adulthood.
Similar early brain changes have also been found in other inherited brain conditions, such as Huntington’s disease.Studies have also found that people who carry genetic changes linked to FTD may show very subtle changes in thinking skills long before a diagnosis. In some families, conditions that affect development, behaviour, or mental health – such as autism or mood disorders – also appear to be more common.
Taken together, this suggests that the genetic changes linked to FTD may affect how the brain develops from an early age. This study aims to better understand these early changes by comparing young people who carry an FTD-related genetic change with their family members who do not carry the change. The study will use brain scans, thinking tasks, and questionnaires to look at brain development, thinking abilities, and behavioural traits.
By learning more about these early changes, this research may help improve understanding of FTD and support the development and timing of future treatments.
REC name
London - City & East Research Ethics Committee
REC reference
26/LO/0015
Date of REC Opinion
5 Feb 2026
REC opinion
Further Information Favourable Opinion