GENFI
Research type
Research Study
Full title
GENetic Frontotemporal Dementia Initiative (GENFI)
IRAS ID
133723
Contact name
Tobias Langheinrich
Contact email
Sponsor organisation
Univeristy of Manchester
Duration of Study in the UK
5 years, 0 months, 0 days
Research summary
Frontotemporal dementia (FTD) is a type of dementia that is a common and important cause of young onset dementia. The only known risk factors for FTD are genetic and multiple family members may develop the condition. The strong genetic component of FTD creates a unique opportunity for early diagnosis and intervention. While the recent scientific advances have transformed our understanding of FTD, we cannot confidently predict when disease-modifying therapy should be started or how the response to it should be monitored. Further progress toward this goal will depend on large-scale, combined efforts to share resources and expertise across specialist centres.
The purpose of this study is to identify and recruit local genetic FTD patients and at-risk family members to a longitudinal study. Multiple techniques will be used (e.g. imaging, neuropsychology, blood sampling and lumbar puncture) to detect early neurocognitive, behavioural and neurobiological characteristics in FTD that allow us to follow the disease course (biomarkers). The study researchers will opt in to share a core data set with the GENetic Frontotemporal Dementia Initative (GENFI); an international group set up to increase international collaboration and share expertise. The GENFI consortium will hold multi-national data and large-scale findings in order to identify new biomarkers and genetic causes of FTD, and promote research network development across the UK, Europe and other continents. It is hoped GENFI will eventually provide a platform to support future therapeutic trials.
REC name
North West - Liverpool Central Research Ethics Committee
REC reference
15/NW/0165
Date of REC Opinion
13 May 2015
REC opinion
Further Information Favourable Opinion