Study of Genetic Frontotemporal Dementia in Youths Aged 9 to 17 With Family History of FTD

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.

Genetic Frontotemporal Dementia Initiative for Neurodevelopment