Oxford Genetic Frontotemporal Dementia Initiative (Oxford GENFI)
Research type
Research Study
Full title
Oxford Genetic Frontotemporal Dementia Initiative (Oxford GENFI)
IRAS ID
188229
Contact name
Christopher R Butler
Contact email
Sponsor organisation
University of Oxford
Duration of Study in the UK
4 years, 11 months, 29 days
Research summary
Frontotemporal dementia (FTD) is a common cause of young onset dementia. Its effect on people of working age with young families represents a major health and economic burden on society. The only known risk factors for FTD at present are genetic with abnormalities (mutations) in three genes accounting for the majority of familial FTD. 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. This study investigates people with or who are at genetic risk of FTD, including people who have developed symptoms and those who have a high risk of developing symptoms in the future because they are family members of someone who carries an FTD gene. Study participants will have psychology testing, brain imaging, blood tests and spinal fluid collection (by lumbar puncture) in order to investigate the patterns of change in these different tests over time. The results will help us to understand the disease from its very earliest stages. It is expected that 80 participants will be seen in Oxford, being assessed three times in total. The key outcomes of the study are to (1) improve understanding of how brain systems break down in genetic FTD and how this break down relates to the underlying behavioural and cognitive deficits, (2) develop markers which help identify the disease at its earliest stage, and (3) develop 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 results of this project will also lead to improvement in the recognition and diagnosis of genetic FTD as well as provide improved information about prognosis for patients and members of their family.
REC name
South Central - Oxford C Research Ethics Committee
REC reference
16/SC/0344
Date of REC Opinion
1 Jul 2016
REC opinion
Favourable Opinion