The Genetic Frontotemporal dementia Initiative (GENFI) is a group of research centres across Europe and Canada with expertise in familial FTD, and is co-ordinated by Dr Jonathan Rohrer and Professor Martin Rossor at University College London.

The aim of the study is to understand more about genetic FTD, particularly in those who have mutations in the progranulin (GRN), microtubule-associated protein tau (MAPT) and chromosome 9 open reading frame 72 (C9ORF72) genes. There are now promising avenues for treatment of these disorders but we still do not know when drugs should be started or how we should measure the response to treatment.

GENFI investigates both people who have developed symptoms and also people who have a risk of developing symptoms in the future because they carry an abnormal genetic mutation. By studying these individuals who are destined to develop the disease later in life we can understand the development from the very earliest changes. The key objectives of GENFI are therefore to develop markers which help identify the disease at its earliest stage as well as markers that allow the progression of the disease to be tracked.

The eventual aim will be to use these markers in future clinical trials of drugs in genetic FTD.

The GENFI consortium currently consists of sites across the UK, Netherlands, Belgium, France, Spain, Portugal, Italy, Germany, Sweden and Canada.

SiteLead researcher
Canada University of TorontoDr Mario Masellis
University of Western OntarioDr Elizabeth Finger
Université Laval, QuébecDr Robert Laforce
McGill University, MontréalDr Simon Ducharme
SwedenKarolinksa Institutet, StockholmProfessor Caroline Graff
United Kingdom University College LondonDr Jonathan Rohrer
University of CambridgeDr James Rowe
University of ManchesterDr Alex Gerhard
University of OxfordDr Chris Butler
NetherlandsErasmus Medical Centre, RotterdamProfessor John van Swieten
GermanyGerman FTLD consortiumProfessor Markus Otto
France ICM ParisProfessor Alexis Brice
Centre Hospitalier Universitaire de RouenDr Didier Hannequin
Centre Hospitalier Régional Universitaire de LilleDr Florence Pasquier
Centre Hospitalier Universitaire de Limoges Dr Philippe Couratier
BelgiumUZ LeuvenDr Rik Vandenberghe
Italy Università degli studi di MilanoDr Daniela Galimberti
Istituto Carlo Besta MilanoProfessor Fabrizio Tagliavini
Università degli studi di BresciaDr Barbara Borroni
IRCCS Fatebenefratelli, BresciaProfessor Giovanni Frisoni
Università degli studi di FirenzeProfessor Sandro Sorbi
Spain Hospital Clinic, BarcelonaDr Raquel Sanchez-Valle
Hospital Universitario Donostia, San SebastianDr Fermin Moreno
PortugalUniversidade de LisboaProfessor Alexandre Mendonça

If you are interested in becoming a GENFI site please contact the GENFI Study Management Committee at