The Genetic Frontotemporal dementia Initiative (GENFI) is a group of research centres across Europe and Canada with expertise in familial frontotemporal dementia (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 individuals 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 individuals who are genetically predisposed to develop the disease later in life, we gain insights into the earliest changes in the development of the disease. 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 GENFI consortium currently consists of sites across the UK, Netherlands, Belgium, France, Spain, Portugal, Italy, Germany, Switzerland, Sweden, Denmark, Finland, Croatia, Serbia, Turkey and Canada.

We are also now collaborating closely with other similar studies around the world through the FTD Prevention Initiative. Through this global initiative we are helping to design clinical trials for genetic FTD.

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