The pilot phase of GENFI ran from 2012 to 2015. It was set up to assess the feasibility of forming a consortium of research centres with an expertise in genetic FTD. The key outcome was the creation of a common methodological platform to study a cohort of individuals affected or at-risk of developing the major genetic forms of FTD, thus allowing tracking of the evolution of genetic FTD from its earliest stages. Funded by a two year Centres of Excellence in Neurodegeneration grant, five centres from the UK, Italy and Canada formed the initial consortium with further centres joining from these countries and also from Sweden and the Netherlands. In total, a cohort of 365 participants was recruited during the pilot phase across thirteen sites.


With the success of the pilot phase of GENFI and confirmation of the feasibility of running a multi-centre genetic FTD study, a five year programme of study started in spring 2015 with the aim of recruiting over 600 participants. This next phase of GENFI aims to build a robust trials platform, with both a cohort of potential participants and an assessment protocol that is designed and powered for clinical trials in premanifest and early disease, with appropriate clinical and biomarker endpoints. Further sites have now joined GENFI including centres in Spain, Portugal, France, Belgium and Germany.

The future

The eventual aim of GENFI is to help initiate clinical trials of disease-modifying therapies in genetic FTD. Our therapeutics core group will work with academia and with the pharmaceutical industry to facilitate these trials at the most appropriate time and with the optimal design.

If you are a company interested in conducting a trial in collaboration with GENFI please send your name, contact email and some basic details about the study to Trials of interest will be discussed with the GENFI Therapeutics Core who will then arrange to review the protocol and discuss the feasibility of performing the study across the GENFI sites.