Sign up by: 30 April 2025
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.
Key Details
Study Sponsor: Funding: NIH International Study on FTD
Location: In-person (Required at Toronto Western Hospital)
How Often: Yearly
Compensation: Yes (Participants will be compensated for their travel, time and parking.)
Contact: Daniela Mora-Fisher, Clinical Research Coordinator
[email protected]
(416) 603-5914
Research Studies
Interested in participating in research studies? Scroll down to browse our current list.
Questionnaire
Longitudinal Frontotemporal Lobar Degeneration (ALLFTD)
Interview/Focus Group
A pilot study assessing the benefits of a dementia caregiver educational brochure on decreased empathy and emotion recognition in patients with neurodegenerative disease
Sign up by: 01 September 2025
Caregiving for people with dementia has become an issue of international importance. The focus of research in caregiver burden and distress in neurodegenerative disease has been on the patients' cognitive deficits and neuropsychiatric symptoms. Social cognition comprises many psychological processes that allows individuals to partake in social situations by enabling them to perceive and recognize the thoughts, emotions, and behaviours of others. There is growing awareness of social cognitive deficits occurring in the different neurodegenerative diseases. People with dementia may display increasing difficulties in understanding social cues or recognizing emotions and caregivers are generally unaware of these deficits. There is growing evidence that changes in emotion recognition can impact caregiver mood and be associated with caregiver burden.
This is a pilot project to assess the feasibility of educating dementia caregivers on emotion recognition deficits and decreased empathy in patients with dementia and the impact of education on caregiver burden, mood and quality of life. Seventy-five dementia caregiver-patient pairs will be recruited for this cross-sectional study. Caregivers' ability to detect emotion recognition deficits and empathy impairment in the patient will be assessed. Caregivers will be given a questionnaire to evaluate their knowledge of emotion recognition deficits and empathy impairment in the patient. Caregiver burden, mood, and quality of life will be assessed. The caregivers will then be given educational material on emotion recognition deficits and empathy impairment in dementia and then be asked to evaluate the information they have received. After 1 month, caregivers will be contacted to assess whether the information they received changed their understanding of emotion recognition deficits and empathy impairment and if it had an impact on caregiver burden, mood and quality of life.
Key Details
Study Sponsor: Toronto Western and General Hospitals
Location: In-person (Optional at Toronto Western Hospital) + Phone (Optional)
How Often: Yearly
Compensation: No
Contact: Daniela Mora-Fisher, Clinical Research Coordinator
[email protected]
416-603-5914
Interview/Focus Group
Four Repeat Taupathy Neuroimaging Initiative
Sign up by: 01 September 2025
This study follows people with progressive supranuclear palsy (PSP) and corticobasal degeneration (CBD) for up to 2 years and compares their brain changes with healthy volunteers of the same age. Researchers hope to learn more about how patients with PSP and CBD progress over time and which measures are best for tracking change and predicting progression. Various measures including brain imaging, cerebrospinal fluid analysis, eye tracking, blood markers and neuropsychological testing will be measured.
Key Details
Study Sponsor: Mayo Clinic NIH
Location: In-person (Required at Toronto Western Hospital)
How Often: A few times a year + Yearly
Compensation: Yes (Participants will be compensated for their time and expenses)
Contact: Daniela Mora-Fisher, Clinical Research Coordinator
[email protected]
416-603-5914
Questionnaire
Measuring nutrition risk in community-living seniors
Sign up by: August 17, 2025
The goal of our study is to see if a nutrition questionnaire can identify nutrition challenges for persons living with diagnosed dementia or mild cognitive impairment when completed by themselves or by their care partner. Persons living with diagnosed dementia or mild cognitive impairment and their care partner will participate. There are three study visits conducted at your home or at the University of Waterloo. The study will involve questionnaires, weight, height and functional assessments and you will record food and beverage intake for one day. At the last study visit you will meet with a registered dietitian for an assessment and receive individualized tips on how you can improve your nutrition.
Key details
Study sponsor: Canadian Institutes of Health Research (CIHR)
Location: In-person participation - Researchers may either come into your personal home or you may choose to complete data collection at the University of Waterloo Toby Jenkins Applied Health Research Building
How often: A few times a month (e.g. biweekly/every 2 weeks)
Compensation: $25 gift card or equal value gift
Contact: Vanessa Trinca, Project Coordinator
519-888-4567 ext. 41470