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Cohort Acronym

Cohort type
Neurodegenerative disease-specific cohort

Frontotemporal dementia, Motor neurone disease

Participant type
At-risk diagnosis

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 

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 
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,
Funders (Core support) UK Medical Research Council
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
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