Actively Recruiting
Genetic Frontotemporal Dementia Initiative for Neurodevelopment
Led by Western University · Updated on 2025-04-03
200
Participants Needed
1
Research Sites
104 weeks
Total Duration
On this page
AI-Summary
What this Trial Is About
Researchers are studying genetic Frontotemporal Dementia (FTD) and related disorders like Motor Neurone Disease and Amyotrophic Lateral Sclerosis in young people aged 9 to 17 who have family members carrying specific genetic mutations. This international, multi-center cohort study focuses on first- and second-degree relatives of known FTD mutation carriers. The study aims to understand brain development changes linked to these genetic risks through long-term observation. Participants will be assessed over time using clinical exams, neuropsychiatric evaluations, cognitive testing, brain imaging, and biological sample collection. The main focus is on brain development measured by structural and functional MRI scans, conducted on average over two years. Parents or guardians must be aware of the genetic nature of FTD in their family before enrollment, and study partners who have regular contact with the youth will provide additional information. Throughout the study, youths and their study partners will attend evaluations that include clinical assessments, questionnaires, cognitive tests, and MRI scans unless declined. Researchers will monitor brain development and other related measures to better understand the progression of genetic FTD in young individuals. The study spans from enrollment until participants reach age 17, ensuring ongoing follow-up and safety monitoring.
CONDITIONS
Brief Title
Genetic Frontotemporal Dementia Initiative for Neurodevelopment
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Written informed consent must be obtained and documented from the participant and their substitute decision maker.
- Youths must be between 9 and 16 years old at enrollment and followed until age 17.
- Must have a first- or second-degree biological relative with a known genetic Frontotemporal Dementia mutation.
- Parent(s) or guardian must approve participation.
- Must have a study partner, typically a parent or guardian, who has regular contact and can provide information.
- Participant must have age-appropriate awareness that Frontotemporal Dementia runs in their family as determined by local investigator.
You will not qualify if you...
- Current brain abnormalities affecting cognition or behavior not related to genetic Frontotemporal Dementia that prevent study assessments.
- Concerns raised by parent/guardian, primary care provider, local investigator, or psychologist that participation may not be in the youth's best interest.
- Lack of a study partner.
- MRI incompatibility criteria, though participants may decline MRI scans and still participate in other study measures.
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Your Study Journey
Duration - 2 to 4 weeks
Participants are screened for eligibility to participate in the trial.
1 visit (in-person)
Duration - Up to 2 years
Participants undergo clinical, neuropsychiatric, cognitive, imaging, and biosample assessments to evaluate brain development and genetic status.
Multiple visits over 2 years including imaging and clinical assessments
Duration - Until participants reach age 17
Participants are assessed longitudinally to monitor brain development and progression of genetic Frontotemporal Dementia-related features.
Regular follow-up visits as scheduled by the study team
Trial Site Locations
Total: 1 location
1
Western University
London, Ontario, Canada, N6A 3K7
Actively Recruiting
Research Team
K
Kristy Coleman
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
0
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