The GENFI study involves over 200 researchers and 1600 participants across Europe and Canada.
The GENFI study team consists of:
- Primary investigators and co-investigators at each site.
- Genetic guardians at each site.
- Study co-ordinators at each site.
- A core team at UCL consisting of Jonathan Rohrer (chief investigator), Lucy Chisman-Russell (study management lead), Arabella Bouzigues (central GENFI coordinator), Phoebe Foster (site qualification and liaison co-ordinator), Eve Ferry-Bolder (data co-ordinator) and Rhian Convery (digital lead) with the support of David Cash (database lead), David Thomas (MR physics lead), Sophie Goldsmith (participant engagement team), Aitana Sogorb Esteve (biobank team), and Martina Bocchetta (imaging team).
The GENFI cores are as follows:
Clinical
The current GENFI clinical assessment consists of a standardised history and examination with scales measuring changes in behaviour and function including the revised Cambridge Behavioural Inventory, Frontotemporal dementia Rating Scale and Clinical Dementia Rating plus NACC FTLD.
Neuropsychology
A GENFI neuropsychological battery has been translated into each of the GENFI languages and consists of tests of executive function, working memory and attention, social cognition, naming and semantic knowledge, as well as tests of visuospatial skills and memory. If you would like further information about this battery please contact genfi@ucl.ac.uk.
Imaging
The current GENFI MR protocol is available for Siemens, Philips and GE 3T scanners and contains volumetric T1, volumetric T2, resting state functional MRI, arterial spin labeling perfusion MRI, diffusion tensor imaging, NODDI and QSM sequences. If you would like further information please email genfi@ucl.ac.uk. An imaging data pipeline is in place for uploading MR images securely from external sites to the GENFI database which uses the XNAT platform.
Biomarkers
CSF and blood (plasma and serum) samples are collected using standardised protocols and stored at the GENFI Biobank at UCL. If you would like more information about the protocols please contact the Biomarkers core at genfi@ucl.ac.uk.
Genetics
DNA is stored at the University of Toronto and also at the University of Antwerp. RNA is also collected and stored at the GENFI Biobank.
Participant engagement
Participants from across different countries have come together to form a GENFI Participant Engagement Board. They advise us about the progress of the study and forthcoming clinical trials.