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

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 using wrist-worn activity monitors, brain function using tablet-based tests of memory and thinking and blood tests to develop ways to predict who will develop ALS or FTD and when, and to measure the effect of preventative treatment.