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 Professor 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.

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.

We are now collaborating closely with other similar studies around the world through the FTD Prevention Initiative. Through this worldwide initiative we are working with pharmaceutical companies to help design clinical trials for genetic FTD.

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

If you are interested in becoming a GENFI site please contact the GENFI Study Management Committee at genfi@ucl.ac.uk.