Frontotemporal dementia

The GENFI study is an observational cohort study of familial Frontotemporal Dementia (FTD) that spans approximately 40 sites across Europe and Canada. The study aims to enhance the understanding of the natural history of FTD through this collaborative network of research to ultimately assist in the development of clinical markers that can inform treatment intervention and assess treatment efficacy in FTD clinical trials.

Who Can Participate?

GENFI includes individuals with symptoms of FTD as well as “at-risk” participants who have a first-degree relative with a known genetic form of the disease. 

What does GENFI involve?

A research visit with GENFI typically lasts one day and is scheduled annually or biennially. During the visit, participants undergo a medical assessment with a doctor, which includes blood and urine samples, and, if willing, a lumbar puncture. The visit also involves approximately one hour of cognitive and memory testing, MRI imaging, an eye-tracking assessment, and a digital cognitive evaluation. Additionally, participants have the opportunity to meet with the research team to discuss any ongoing concerns. 

All parts of the visit are entirely optional, and no individual results will be disclosed to participants or relatives of participants who take part in the study. Results will be available at a group level once the study is completed. We then plan to publish the results of the study in scientific journals. Information that would identify you or any other participant will not be included in any publication.

While no payment is offered, travel, accommodations, and meal costs will be reimbursed. 

The FTD Talk team:

Also led by Professor Jonathan Rohrer, FTD Talk is a resource for the FTD community, providing information, factsheets, and updates on ongoing research. 

The team runs the Early Detection of Frontotemporal Dementia (EDoF) studies, a digital biomarker initiative focused on early diagnostic and home-monitoring tools for dementia detection. This project incorporates a range of innovative assessments, such as:
•    Eye Movement and Cognitive Tracking: Using eye-tracking devices to measure visual and cognitive responses.
•    Actigraphy and Sleep Monitoring: Using Fitbit devices to monitor sleep patterns and activity levels.
•    Early Motor Nerve Dysfunction Measurement: Using surface EMG to detect subtle motor nerve changes.
•    Detailed Cognitive Testing: Conducting comprehensive assessments with a computerised test battery on an iPad app called Ignite.
These measures aim to enhance early diagnosis and monitoring in FTD, contributing to the GENFI study and aiming to provide robust outcome measures for future clinical trials.  

Additionally, FTD talk co-ordinates the FTD Prevention Initiative (FPI), a global community focused on advancing research into genetic FTD. The FPI facilitates data sharing across research networks, helping to build a more comprehensive understanding of the natural history of FTD and supporting the development of clinical trials. Learn more about the FPI on their website: https://thefpi.org/.

More information about FTD and the research team can be found at www.ftdtalk.org.

Want to be involved in our research?

For more information about any of our research, please contact our UCL GENFI Study Coordinator, Toya Pauwels Romero, at genfi@ucl.ac.uk or visit the GENFI website.

Our work at UCL relies on the invaluable contributions of those affected by Frontotemporal Dementia. Their participation is essential to advancing our research, and we are deeply grateful for their commitment.