Genetic Frontotemporal Dementia Initiative for Neurodevelopment
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.
• 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.