NCT05779813 Genetic Frontotemporal Dementia Initiative for Neurodevelopment
| NCT ID | NCT05779813 |
| Status | Recruiting |
| Phase | — |
| Sponsor | Western University |
| Condition | Frontotemporal Dementia |
| Study Type | OBSERVATIONAL |
| Enrollment | 200 participants |
| Start Date | 2023-03-31 |
| Primary Completion | 2033-03 |
Eligibility & Interventions
Eligibility Fast-Check
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What to Expect as a Participant
This is an observational study. You will not receive an experimental treatment; researchers will collect data based on your existing condition or standard treatment.
This trial targets 200 participants in total. It began in 2023-03-31 with a primary completion date of 2033-03.
⚠ This information is for research awareness only. Always consult your physician before joining any clinical trial. Participation is voluntary and you may withdraw at any time.
Brief Summary
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.
Eligibility Criteria
Inclusion Criteria: 1. Written informed consent must be obtained and documented (from the participant and their substitute decision maker). This can be obtained in person or remotely. 2. Youths between the ages of 9 and 16 inclusive at time of enrollment, followed until age 17. 3. 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). 4. Parent(s)/guardian deem appropriate to participate. 5. 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. 6. Must have age-appropriate awareness that FTD runs in their family as determined by local PI. Exclusion Criteria: 1. 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). 2. 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. 3. Lack of study partner. 4. For MRI: meeting any MRI incompatible criteria. Note: Participants may opt to decline MRI scans and complete the other measures.
Contact & Investigator
Elizabeth Finger, MD
PRINCIPAL INVESTIGATOR
Western University
Frequently Asked Questions
Who can join the NCT05779813 clinical trial?
This trial is open to participants of all sexes, aged 7 Years or older, up to 17 Years, studying Frontotemporal Dementia. Full inclusion and exclusion criteria are listed in the Eligibility Criteria section. Always confirm your eligibility with the research team before applying.
Is NCT05779813 currently recruiting?
Yes, NCT05779813 is actively recruiting participants. Contact the research team at cognitive.neurology@sjhc.london.on.ca for enrollment information.
Where is the NCT05779813 trial being conducted?
This trial is being conducted at London, Canada.
Who is sponsoring the NCT05779813 clinical trial?
NCT05779813 is sponsored by Western University. The principal investigator is Elizabeth Finger, MD at Western University. The trial plans to enroll 200 participants.