Genetic Frontotemporal Dementia Initiative for Neurodevelopment

You may qualify if

• 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.

You're excluded if

• 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.

The sponsor's own eligibility wording, lightly reformatted. The study team makes the final eligibility decision — worth discussing with your doctor.

Eligibility criteria as of 2025-04-03