Genetic study of Frontotemporal Dementia in youth from affected families

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

This international cohort study focuses on first and second-degree family members of individuals with Frontotemporal Dementia (FTD) mutations. It aims to assess genetic FTD and related disorders in youths aged 9-17 who have a known family history of FTD. Participants will undergo longitudinal evaluations involving clinical assessments, neuropsychiatric evaluations, cognitive testing, imaging, and biosample collection. The study seeks to enhance understanding of the genetic implications of FTD in younger populations.

Why it matters

Who can join: the full rules

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.

Where it's running

• Western University
  London, Ontario, Canada Recruiting

Study contacts

• Principal investigator: Elizabeth Finger, MD — Western University
• Study coordinator: Kristy Coleman
• Email: cognitive.neurology@sjhc.london.on.ca
• Phone: 519-646-6100

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How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.