Studying young relatives of people with genetic frontotemporal dementia
Follows young family members of people with inherited frontotemporal dementia gene changes.
Plain-language title generated from the registry record
Registry title: Genetic Frontotemporal Dementia Initiative for Neurodevelopment
Key facts
- Where
- London, CanadaSee the site
Could this be for you?
Answer for yourself. This is not a decision: only the study team can say whether you can take part.
- Are you between 7 and 17 years old?
Source: NCT05779813, who can take part
Where in Canada
- Western UniversityLondon, CanadaTaking people
Questions to ask the study team
- How often do I need to come in, and for how long each time?
- Are travel costs paid?
- Can I keep my own doctor?
- What happens if I want to stop?
Trial details
- Who runs it
- Western University
- Trial code
- NCT05779813
- Record updated
- 3 April 2025
- Original description
This is an international multi-centre cohort study of first and second degree family members of individuals who carry Frontotemporal Dementia (FTD) mutations in MAPT, GRN or C9ORF72 repeat expansions for youths between the ages 9-17.Read full original descriptionShow less
Genetic Frontotemporal Dementia Initiative for Neurodevelopment
This is an international multi-centre cohort study of first and second degree family members of individuals who carry Frontotemporal Dementia (FTD) mutations in MAPT, GRN or C9ORF72 repeat expansions for youths between the ages 9-17.
Inclusion: Written informed consent must be obtained and documented (from the participant and their substitute decision maker). This can be obtained in person or remotely; Youths between the ages of 9 and 16 inclusive at time of enrollment, followed until age 17; Youths must have a 1st or 2nd degree biological relative who has participated (past or present) in the Genetic Frontotemporal Dementia Initiative (GENFI) study or with genetic FTD (i.e. a known mutation in biological parent or grandparent); Parent(s)/guardian deem appropriate to participate; Must have a study partner who can participate as required in the protocol (provide corroborative information). Study partner must have regular contact with the participant and must be parent/guardian of this participant; Must have age-appropriate awareness that FTD runs in their family as determined by local PI.
Exclusion: Current structural brain abnormality affecting cognition or behaviour not thought to be possibly related to genetic FTD that would prevent completion of study assessments (such as brain tumor, stroke, hydrocephalus); Other concerns that participation in the study may not be in the best interest of the youth or parent, as raised by the participant's parent/guardian/primary care provider, local site PI or psychologist; Lack of study partner; For MRI: meeting any MRI incompatible criteria. Note: Participants may opt to decline MRI scans and complete the other measures.