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 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.
|University of Toronto||Dr Mario Masellis|
|University of Western Ontario||Dr Elizabeth Finger|
|Université Laval, Québec||Dr Robert Laforce|
|McGill University, Montréal||Dr Simon Ducharme|
|Karolinksa Institutet, Stockholm||Professor Caroline Graff|
|University College London||Dr Jonathan Rohrer|
|University of Cambridge||Dr James Rowe|
|University of Manchester||Dr Alex Gerhard|
|University of Oxford||Dr Chris Butler|
|Erasmus Medical Centre, Rotterdam||Professor John van Swieten|
|Universität Ulm||Professor Markus Otto|
|Ludwig-Maximilians-Universität München||Dr Johannes Levin|
|Universität Tübingen||Dr Matthis Synofzik|
|ICM Paris||Professor Alexis Brice|
|Centre Hospitalier Universitaire de Rouen||Dr Olivier Martinaud|
|Centre Hospitalier Régional Universitaire de Lille||Dr Florence Pasquier|
|UZ Leuven||Dr Rik Vandenberghe|
|Università degli studi di Milano||Dr Daniela Galimberti|
|Istituto Carlo Besta Milano||Professor Fabrizio Tagliavini|
|Università degli studi di Brescia||Dr Barbara Borroni|
|IRCCS Fatebenefratelli, Brescia||Professor Giovanni Frisoni|
|Università degli studi di Firenze||Professor Sandro Sorbi|
|Hospital Clinic, Barcelona||Dr Raquel Sanchez-Valle|
|Hospital Universitario Donostia, San Sebastian||Dr Fermin Moreno|
|Universidade de Lisboa||Professor Alexandre Mendonça|
|Universidade de Coimbra||Dr Isabel Santana|
If you are interested in becoming a GENFI site please contact the GENFI Study Management Committee at firstname.lastname@example.org.