Cohort Acronym
GENFI
Cohort type
Neurodegenerative disease-specific cohort
Disease
Frontotemporal dementia, Motor neurone disease
Participant type
At-risk diagnosis
Profile
GENFI
Cohort type
Neurodegenerative disease-specific cohort
Disease
Frontotemporal dementia, Motor neurone disease
Participant type
At-risk diagnosis
Profile
Recruitment Period
2015-20
Sample size at start or planned sample size if still recruiting
800
Estimated Current Sample Size
0 to 4,999
Age at Recruitment
>18
Gender
Male and Female
Abstract
GENFI is a five year longitudinal biomarker cohort study of genetic Frontotemporal Dementia and its associated disorders (including MND/ALS) investigating members of families with a known mutation in GRN or MAPT or an expansion in C9orf72 (including those affected with the disorder as well as at-risk members of families). Non-carrier first-degree relatives will serve as a control group.
All GENFI participants will be assessed longitudinally (annually) with a set of clinical, neuropsychiatric, cognitive, imaging and biosample protocols.
Last update – 25/01/2017
Country
United Kingdom
Contact details
Institution name
University College, London
Website
http://genfi.org.uk/
Principal Investiator (PI)
Dr Jonathan Rohrer
Contact email
[email protected]
Contact phone number
+44 (0) 203 4483039
Address
Dementia Research Centre,
UCL Institute of Neurology,
8-11 Queen Square,
London,
WC1N 3AR
UCL Institute of Neurology,
8-11 Queen Square,
London,
WC1N 3AR
Funders (Core support)
UK Medical Research Council
The Bluefield Project
The Bluefield Project
Variables Collected
Brain related measures: Behaviour, Cognitive function, Neurological
Funtional rating: N/A
Anthropometric: N/A
Physical: N/A
Biological samples: Blood, Cerebral spinal fluid (CSF)
Genotyping: Gene screening
Brain imaging: Magnetic resonance imaging (MRI)
Brain banking: N/A
Lifestyle: Alcohol, Smoking
Socio-economic: Education, Ethnic group, Occupation and employment
Health service utilisation: N/A