The FTD Prevention Initiative (FPI) brings together genetic FTD cohorts from across Europe, North America, South America, Australasia and Asia.
It is is led by Professor Jonathan Rohrer at UCL in the UK, and Professor Adam Boxer at UCSF in the US.
Our overall aim is to promote clinical trials of new therapies to prevent FTD.
Key goals:
- Create uniform standards for conduct of clinical trials in familial FTD syndromes.
- Create an international database of familial FTD research participants who might be eligible for clinical trials.
- Promote responsible data sharing within the context of observational studies and trials in familial FTD.
We run a half-day meeting every 2 years at the ISFTD conference. Our last meeting was in 2024 in Amsterdam and covered the design of prevention trials in MAPT and C9orf72 mutations. Our upcoming meeting will be on October 7th 2026 in Philadelphia and will cover the current state of play in progranulin mutations: “Lessons learned and pathways forward in GRN-FTD trials”. Contact our team to register for the meeting.
More details about the FPI can be found at: thefpi.org
- If you are interested in understanding more about the FPI or would like to be a participant in one of the familial FTD cohort studies please email Sophie Farley at genfi@ucl.ac.uk.
For coverage of our research in Alzforum see: