The GENFI study involves over 100 researchers and 1000 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 Russell (admin and international liaison lead), Arabella Bouzigues (lead study coordinator) and Phoebe Foster (site qualification and liaison research assistant) with the support of David Cash (database and imaging acquisition lead), David Thomas (MR physics lead), Emily Todd (imaging research assistant), Imogen Swift and Kathryn Knowles (biobank research assistants) and Caroline Greaves and Sophie Goldsmith (Participant Engagement Board leads).
The GENFI cores are as follows:
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.
A GENFI neuropsychological battery has been translated into each of the GENFI languages (English, French, German, Dutch, Swedish, Finnish, Italian, Spanish and Portuguese) 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 firstname.lastname@example.org.
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 and diffusion tensor imaging sequences. If you would like further information please email email@example.com. An imaging data pipeline is in place for uploading MR images securely from external sites to the GENFI database which uses the XNAT platform.
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 firstname.lastname@example.org.
DNA is stored at the University of Toronto at the GENFI DNA bank. RNA is also collected and stored at the GENFI Biobank.
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.