NCT05779813Recruiting
Genetic Frontotemporal Dementia Initiative for Neurodevelopment
Source: ClinicalTrials.gov · Last updated 3 Apr 2025 · Not updated for over 12 months - ask the site whether it is still open
Brief summary (registry, in English)
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.
- Status (registry)
- Recruiting
- Study type
- Observational
- Enrollment
- 200 (estimated)
- First submitted
- 27 Feb 2023
- Start date
- 31 Mar 2023
- Primary completion date
- Mar 2033
- Lead sponsor
- Western University
- Diseases
- Frontotemporal dementia
- NCT number
- NCT05779813
What you commit to
- Study type: Observational
- Planned participants: 200
- From 31 Mar 2023 to the primary completion date, Mar 2033
- 1 site in 1 country
- Visits and tests: ask the trial team, the registry does not list them
Built from the registry fields of ClinicalTrials.gov. It describes the study, not your situation.
Who cannot take part
Copied verbatim from ClinicalTrials.gov and grouped by topic. Only the trial team decides who can take part.
Other illness
- 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
- 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.
Who the study is looking for
- 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.
Age in the registry: 7 years to 17 years · Sex: All · Accepts healthy volunteers
Sites (1)
Sites in registry order. Pick your city on the disease page to sort them by distance.
| Site | City | Country | Site status |
|---|---|---|---|
| Western University Coordinator of this site? Confirm its status | London | Canada | Recruiting |
This page is information, not medical advice. Discuss any trial with your doctor.