Genetic Frontotemporal Dementia Initiative

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

Types Neurodegenerative disease-specific cohort
Participant Types At-risk diagnosis
Countries United Kingdom
Genders Male and Female
Sample sizes 0 to 4,999
Ages 10 to 19|20 to 39|40 to 59|60 to 100
Brain related measures Behaviour|Cognitive function|Neurological
Funtional rating
Anthropometric
Physical
Biological samples Blood|Cerebral spinal fluid (CSF)
Genotyping Gene screening
Brain imaging Magnetic resonance imaging (MRI)
Brain banking
Lifestyle Alcohol|Smoking
Socio-economic Education|Ethnic group|Occupation and employment
Health service utilisation
Institute names University College, London
Current Sample Sizes 0 to 4,999

age at recruitment >18
last updated
recruitment period 2015-20
estimated current sample size number value 500
cohort acronym GENFI
start date 2015-20
pi Dr Jonathan Rohrer
website http://genfi.org.uk/
contact details Dementia Research Centre,
UCL Institute of Neurology,
8-11 Queen Square,
London,
WC1N 3AR
abstract  GENFI is a longitudinal cohort focused on Frontotemporal Dementia and its associated risks. 800 participants over 18 will be recruited between 2015-2020 to participate.
funders  UK Medical Research Council
The Bluefield Project
contact email [email protected]
contact phone number +44 (0) 203 4483039
estimated current sample size 0 to 4,999
sample sizes 800