GENFI - A new multi-centre platform for the study of frontotemporal lobar degeneration

http://genfi.org.uk/

Frontotemporal lobar dementia (FTLD) is a diverse group of focal dementias that collectively constitute a major socio-economic and human burden, particularly in younger populations. It overlaps with a number of other neurodegenerative disorders including motor neurone disease/amyotrophic lateral sclerosis (MND/ALS). FTLD has a strong genetic component (in particular, pathological mutations of MAPTPGRN, or C9ORF72), amplifying the human cost of these diseases but also creating a unique opportunity for early diagnosis and intervention. Recent advances in molecular biology and neuropathology have transformed our understanding of FTLD but this has yet to be translated into effective, disease-modifying therapies. Further progress toward this goal will depend on large-scale collaborative efforts that harness resources and expertise across specialist centres.
This study will evaluate the feasibility of a platform for mounting future large-scale natural history studies of FTLD and its associated disorders and for conducting clinical trials of disease-modifying interventions. The GENetic Frontotemporal Dementia Initiative (GENFI) will unite the collective expertise and resources of five internationally recognized centres-of-excellence in the field.
Key outcomes will include foundation of a shared multi-national consortium with centralized data repositories and common data flow pathways; evaluation of the sustainability of the methodological platform; plans for its continuation and expansion; and sample size estimates and candidate biomarkers of disease onset and progression in FTLD that will support future large scale therapeutic trials.

WORKING GROUP 

UK

Italy

London: Martin Rossor (CI); Jonathan D Rohrer (site PI) Brescia FBF: Giovanni Frisoni (site PI)
Cambridge: James Rowe (site PI) Brescia UNIBS: Barbara Borroni (site PI)
Manchester: Alex Gerhard (site PI) Milano (UNIMI): Daniela Galimberti (site PI)

Canada

Milano (INCB): Fabrizio Tagliavini (site PI)
Toronto: Mario Masellis (site PI) Firenze: Sandro Sorbi (site PI)
London Ontario: Elizabeth Finger (site PI) Lamezia Terme: Amalia Bruni (site PI)

The Netherlands

Sweden

Amsterdam/Rotterdam: John van Swieten (site PI) Stockholm: Caroline Graff (site PI)