Summary: 

GENFI is conducted at research centers throughout Europe and Canada. Researchers collect demographic characteristics, vital signs and motor scales; cognitive and speech data; neuroimaging data; and biological specimens with associated biofluid biomarkers and genetic data in order to better understand the basis of neurodegenerative conditions.

Who is eligible?

This study is open to individuals age 18 and older in the following groups:

1. People with a genetic form of frontotemporal degeneration (FTD)
2. First degree relatives (parents, children, siblings) of someone with a genetic form of FTD.

What will happen during the study?

Participants will have a yearly visit (every 2 years if under age 40).  During the first visit the study team will review the informed consent.  Following consent, patients will have an MRI brain scan, cognitive testing, eye tracking tests, digital assessments, a medical exam and an optional lumbar puncture (spinal tap).  

There is no experimental treatment as part of this study.

What are they measuring?

• changes in neuropsychological tests.
• changes in language processing
• changes in speech and language processing
• changes in biofluids and biomarkers
• changes in imaging

How long will participants be involved?

Participation will last up to patient withdrawal, death or lack of study funding.