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

TDRA Site:

Sunnybrook Health Sciences Centre

Address: 2075 Bayview Ave, Toronto, ON M4N 3M5

Age Group:

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Target Population:

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The listing of a study on the Toronto Dementia Network (TDN) 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 four memory clinics across Toronto at Baycrest, the Centre for Addiction and Mental Health, 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).