Genetic Frontotemporal Dementia Initiative (GENFI)
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
Study Video
Advances in Dementia Research Webinar- Listen to Dr. Mario Masellis (Co-Principal Investigator) discuss the GENFI study in further detail:

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Disclaimer
The listing of a study on the TDRA’s Research Studies Portal is for informational purposes only. The safety, efficacy or scientific validity of the studies listed here have not been evaluated by The Alzheimer Society of Toronto (AST) or the Toronto Dementia Research Alliance (TDRA). The TDRA is an academic coalition among the University of Toronto and Baycrest, the Centre for Addiction and Mental Health, Ontario Shores Centre for Mental Health Sciences, Sunnybrook Health Sciences Centre, and the University Health Network. The information collected will be kept and guarded by TDRA. Choosing to participate in a study is an important personal decision. Before you participate in a study, you should make sure you understand the risks and potential benefits and discuss all options with your health care provider(s).