Longitudinal Frontotemporal Lobar Degeneration (ALLFTD)

Observational Study

Get in touch about this study

What is the study about?

This is a 5-year study which aims to evaluate and characterize frontotemporal lobar degeneration (FTLD) patients and asymptomatic individuals belonging to family with a strong history of an FTLD syndrome and their caregivers. This study seeks to learn more about how FTLD syndromes progress over time and to develop new tools that can aid with diagnosis, treatment and monitoring of FTLD.


Eligibility–Who can participate?

You may be able to participate if you meet the following:

  • Be 18 years old or older
  • Have a reliable study partner who can provide information on the participant’s behaviour, thinking and functioning.
  • Be able to read, understand and speak English for neuropsychological testing
  • Either be a be a member of a family with a strong history of an FTLD syndrome OR a patient with the diagnosis of:
    • Frontotemporal dementia (FTD)
    • Corticobasal syndrome (CBS)
    • Progressive supranuclear palsy (PSP)
    • Primary progressive aphasia (PPA)
    • Behavioral variant FTD


Time requirement:

Participants will have the option of choosing to join one of two groups.


Longitudinal Group:

  • Participants and their study partners will be asked to come in for a research visit every year for 5 years. And a follow up phone call at 3-6 months after each yearly visit.
  • Each visit will take 2-3 days to finish the following assessments:
    • MRI brain scan (to be done in Toronto General Hospital)
    • Blood draw for genetic research
    • Clinical Exam – medical history, physical and neurological exam
    • Neuropsychological Testing
    • Questionnaires and surveys


Biofluid Group:

  • Participants will come in for one research visit and then have remote follow-ups by phone every year for 5 years. The research visit will take 1 day to complete, and the following assessments will be done:
    • Clinical Exam – medical history, physical and neurological exam
    • Questionnaires and surveys
    • Blood draw for genetic research


TDRA investigator

Dr. Carmela Tartaglia


More information




Advances in Dementia Research Webinar- Listen to Dr. Carmela Tartaglia (Principal Investigator) discuss the ALLFTD study in further detail. https://youtu.be/WF0qwQAqpM4

TDRA Site:

University Health Network (UHN)-Toronto Western Hospital

Address: 399 Bathurst Street, Toronto ON M5T 2S8

Age Group:

, , , , , , , , , , ,

Target Population:

, , , ,

Do you have questions about research studies you saw on this page? Please contact tdra@utoronto.ca


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).