Genetic Frontotemporal Dementia Initiative (GENFI)

Observational Study

Get in touch about this study

What is the study about?

This study looks at people aged 18 and older who either are at risk or have symptoms of frontotemporal dementia caused by genetics. By monitoring participants over time, researchers hope to find ways to diagnose frontotemporal dementia, understand how the disease develops, find new treatments and monitor outcomes.

 

 

Eligibility- Who can participate?

Participants must be:

  • 18 years of age or older
  • a member of a family with a known genetic mutation that causes frontotemporal dementia (i.e., mutations in the granulin (GRN), microtubule-associated protein tau (MAPT), or chromosome 9 open reading frame 72 (C9ORF72) genes)

 

Time requirement

Once a year for 3+ years. The visits will include undergoing brain imaging, cognitive testing, and taking blood samples

 

TDRA Study Investigator

Dr. Mario Masellis

 

Video

Advances in Dementia Research Webinar- Listen to Dr. Mario Masellis (Co-Principal Investigator) discuss the GENFI study in further detail: https://www.youtube.com/watch?v=UuvjuVTcEU4

TDRA Site: