Twice a year, the GENFI consortium comes together, once in person and once virtually, to share research updates, discuss future plans, and celebrate the progress made throughout the year. The Genetic FTD Initiative (GENFI) is a European-Canadian collaborative study focused on identifying the very earliest symptoms of frontotemporal dementia (FTD), with the goal of deepening our understanding of the condition.
The 2025 Winter Meeting, held on 4th December, brought together researchers from across the world to showcase the latest advances in FTD research. The meeting featured a dynamic programme of working group updates, project presentations, and discussions highlighting both scientific progress and future directions for the consortium.
A special highlight of the meeting was celebrating the milestone of 100 published papers as a consortium, bringing us 100 papers closer to understanding and treating FTD! We celebrated this milestone with some cake and a reflection on our favourite papers.
Working group updates:
The meeting opened with updates from the GENFI Working Groups. The Language Working Group shared progress in advancing language-based assessments in FTD research. This was followed by a Clinical Genetics update, sharing insights into ongoing genetic analyses and developments across participating sites.
Maura Malpetti then delivered the PET Working Group update, highlighting advances in imaging biomarkers. The PET working group uses PET scanners, which stands for Positron Emission Tomography (PET) scanner, to identify protein build ups in the brain. These build ups can’t be seen using a traditional MRI scan.
Project Updates
Following a short break, the focus shifted to project updates from across the consortium. Rhian Convery opened the session with an update on IGNITE and the Digital Working Group, highlighting progress in digital tools and remote research approaches.
This includes using Ignite, a cognitive assessment app, as well as other tools including digital wearables to study how we can detect very early changes in FTD.
If you are curious about the digital tools that the GENFI study uses, read Luna’s blog here:
Subsequent presentations explored how data-driven–severity metrics, rather than time alone, can be used to map symptom progression in dementia. The next presentation focused on diagnostic confidence in FTD, demonstrating that confidence levels are generally lower in individuals carrying the C9orf72 mutation, due to its association with slower disease progression. Additionally, age was identified as the strongest factor influencing diagnostic confidence.
Eva Cullen, from our team, then presented work examining the relationship between cognitive and physical activity in FTD. Her findings showed that higher levels of activity are associated with reduced clinical severity and slower cognitive decline, supporting the concept of cognitive and physical reserve in FTD.
Eva’s work suggests that lifestyle factors may play a role in influencing symptoms in FTD, even in a type of dementia that is caused by a genetic factor, and not only in conditions more directly linked to lifestyle, such as stroke. The research on physical activity and cognition in FTD is very limited, so it was great to hear about her pilot data and findings!
Eve Ferry-Bolder then shared an exciting update on rapid imaging in FTD. This approach shortens MRI scan times during research visits, helping to lower costs and making the experience far more comfortable for participants: especially for anyone who finds scanners claustrophobic!
Her work showed that rapid MRI scans are just as effective as traditional T1 scans at distinguishing asymptomatic mutation carriers from control participants. These results are especially encouraging, as they suggest that faster scanning protocols can reduce both time and cost without compromising data quality or clinical usefulness.
A great end to the year
The 2025 GENFI Winter Meeting highlighted the breadth and depth of ongoing research across the consortium, from genetics and imaging to lifestyle factors and digital innovation. The presentations reflected our strong commitment to improving early diagnosis, understanding disease variability, and developing more efficient and accessible research approaches to help us understand FTD!
As the consortium continues to grow and collaborate internationally (we now have 47 sites!), the work shared at this meeting represents an important step toward improving outcomes for individuals and families affected by frontotemporal dementia.
If you are interested in learning more about the GENFI study and participating in research, click here.
Amelia Blesius on behalf of the FTD Talk Team.
