Hi Graham,

Apologies for the delay in responding to your query.

It is indeed great news to have another clinical trial tackling a specific gene variation in MND and we are looking forward to seeing whether the results will be as positive as we all hope.

Just to clarify, although the trial is already recruiting participants in the USA, it is still in the administrative stages in the UK and so we are not sure when and where the trial will take place. The study in Oxford recruiting people with the faulty C9ORF72 gene is a biomarker study rather than a clinical trial. If you would like to see an up to date list of clinical trials recruiting in the UK and worldwide, you can have a look at this page: https://www.mndassociation.org/resea...atment-trials/

Regarding your question as to how your gene defect can be identified, this is usually done by being referred to a genetic counsellor via your GP, who can then test you for specific genetic variations, especially if you have links to neurodegenerative diseases in your family. If you would like to know more, then please feel free to email our Research team at research@mndassociation.org

I do hope this is helpful.

Kindest regards,
Prachi