The GENetic Frontotemporal Dementia Initiative (GENFI): a new multi-centre platform for the study of frontotemporal lobar degeneration

Study Code / Acronym
GENFI
Award Number
MR/J009482/1
Programme
Research Grant
Status / Stage
Completed
Dates
1 May 2012 -
30 April 2014
Duration (calculated)
01 years 11 months
Funder(s)
MRC (UKRI)
Funding Amount
£211,668.58
Funder/Grant study page
MRC UKRI
Contracted Centre
University College London
Contracted Centre Webpage
Principal Investigator
Professor Rossor, Martin Neil
WHO Catergories
Development of Biomarkers
Improving clinical trials
Understanding Underlying Disease
Disease Type
Frontotemporal Dementia (FTD)

CPEC Review Info
Reference ID274
ResearcherReside Team
Published12/06/2023

Data

Study Code / AcronymGENFI
Award NumberMR/J009482/1
Status / StageCompleted
Start Date20120501
End Date20140430
Duration (calculated) 01 years 11 months
Funder/Grant study pageMRC UKRI
Contracted CentreUniversity College London
Contracted Centre Webpage
Funding Amount£211,668.58

Abstract

The frontotemporal lobar degenerations (FTLD) are a group of dementias characterized by progressive loss of brain cells from the frontal and temporal lobes. Frequently affecting a relatively younger age group compared with other dementias they collectively constitute a major socio-economic and human burden. FTLD commonly runs in families with many patients having a particular genetic mutation as the cause of their disease. The heritable nature of FTLD amplifies the human cost of these diseases but also creates a unique opportunity for making an earlier diagnosis and intervening at an early stage of disease. The understanding of FTLD has hugely advanced in recent years but this has yet to lead to any effective disease-modifying therapies. It is likely that any further progress towards this goal will depend on collaboration between specialist centres. The GENetic Frontotemporal Dementia Initiative (GENFI) aims to unite the expertise and resources of five internationally recognised research departments in the field. The objective of GENFI will be to set up a multi-national consortium with a common platform for the assessment of genetic FTLD patients. Clinical, behavioural, brain imaging, spinal fluid and blood sample data will be collected with the aim of developing markers of the onset and progression of disease in FTLD. Ultimately, the study will explore the feasibility of using the common framework developed here to support future large-scale studies of FTLD, in particular the development of clinical trials of disease-modifying interventions.

Aims

The objective of GENFI will be to set up a multi-national consortium with a common platform for the assessment of genetic FTLD patients. Clinical, behavioural, brain imaging, spinal fluid and blood sample data will be collected with the aim of developing markers of the onset and progression of disease in FTLD. Ultimately, the study will explore the feasibility of using the common framework developed here to support future large-scale studies of FTLD, in particular the development of clinical trials of disease-modifying interventions.