C9orf72 cohort study
Collecting biological samples to search for causes of C9orf72-related MND
The purpose of this study is to investigate possible causes of nerve damage in patients with a fault in a gene known as C9orf72. This faulty gene is known to cause Amyotrophic Lateral Sclerosis (ALS; also known as motor neuron disease or MND) and a linked condition called Frontotemporal Dementia (FTD). Finding out why some people carrying the faulty C9orf72 gene develop ALS or FTD may help us in the future to find treatments to help prevent these conditions.
What does taking part involve?
Taking part involves visiting the University of Oxford to take part in some or all of the following:
- physical and cognitive assessment
- Blood sample
- Cerebrospinal fluid (CSF) sample
- MRI scan
- Magnetoencephalography (MEG) scan
- Surface EMG
You do not necessarily have to take part in all aspects of the study.
University of Oxford, Oxford
Who can take part?
- People known to carry a faulty C9orf72 gene
- People who have an immediate family member (e.g., parent, sibling, child) known to carry a faulty C9orf72 gene
- People who are not related to anyone who has had ALS/MND or FTD
How do I take part?
Please contact firstname.lastname@example.org or call 01865 227714 for more information.
Expiry date: N/A