Multimodal remote monitoring of C9orf72 hexanucleotide repeat expansion carriers (MONITOR-C9)

Dr Alexander Thompson
PI Dr Alexander Thompson
Co-investigators Prof. Kevin Talbot
Prof. Martin Turner
Prof. Aiden Doherty
Prof. Jonathon Rohrer
Dr Rhian Convery
Dr Andrew Douglas
PI organisation University of Oxford
Funding awarded £712,536
Completion date 31st July 2026 (24 months)

Around one in ten cases of amyotrophic lateral sclerosis (ALS, also known as motor neuron disease, MND) and frontotemporal dementia (FTD) cases are caused by an abnormality in a gene called C9orf72. Not everyone with the abnormal gene will develop ALS or FTD and we cannot currently predict who will be affected or when. We urgently need to develop treatments that prevent people who carry the C9orf72 genetic abnormality developing ALS or FTD, but the lack of a means to predict who the disease will strike or when is a major barrier. This project will use measurement of physical activity, brain function and blood tests to develop ways to predict who will develop ALS or FTD and when, and to measure the effect of preventative treatment.

Dr Alexander Thompson