GENFI has built a robust trials platform and developed a number of novel biomarkers for use in clinical trials.
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 13 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. Further sites joined GENFI2 including centres in Spain, Portugal, France, Belgium and Germany, and over 1000 participants were recruited across 25 sites. This phase of GENFI built a robust trials platform and developed a number of novel biomarkers for use in trials.
GENFI 3 started in June 2021. This phase will focus on developing biomarkers of proximity to symptom onset as well as investigating the use of digital biomarkers and remote monitoring. So far GENFI 3 consists of 34 centres. We will work closely with other familial FTD cohorts across the world within the FTD Prevention Initiative to align the studies more closely. We will also work with pharmaceutical companies as GENFI participants enter into therapeutic trials.