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 study management committee at UCL consisting of Dr Jonathan Rohrer and the leads for imaging acquisition, imaging analysis, MR physics, quality control and the database.

The six core scientific groups of GENFI are made up of investigators from across the different sites:

Clinical

The Clinical core group consists of clinicians with expertise in genetic FTD. The current GENFI clinical assessment consists of a standardised history and examination with scales measuring changes in behaviour and function including the Cambridge Behavioural Inventory and the Frontotemporal dementia Rating Scale.

Neuropsychology

The Neuropsychology core group consists of neuropsychologists representing each of the GENFI languages (English, French, German, Dutch, Swedish, Italian, Spanish and Portuguese). A GENFI neuropsychological battery has been translated into each of these languages and consists of tests of executive function, working memory and attention, social cognition and naming/semantic knowledge, as well as tests of visuospatial skills and memory. If you would like further information about this battery please contact the Neuropsychology core group at genfi@ucl.ac.uk.

Imaging

The Imaging core group is made up of imaging scientists with expertise in the acquisition and analysis of both magnetic resonance imaging and PET 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 and diffusion tensor imaging 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

The Biomarkers core group consists of researchers with an expertise in serum and CSF biomarkers. CSF and blood (DNA, RNA, 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 group at genfi@ucl.ac.uk.

Genetics

The Genetics core group consists of the Genetic Guardians from each site. One of the the main roles of the guardians is to ensure that the genetic test results of at-risk individuals are uploaded to a secure part of the database and are not fed back to the participant or to any of the clinical study team.

Therapeutics

The Therapeutics core group is made up of researchers with experience in clinical trials in dementia. The main aim of the group is to ensure that the GENFI consortium is well placed to be able to help initiate trials of disease-modifying therapy in genetic FTD in the future.