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Thread: Gene silencing Work in the UK

  1. #11
    Forum Moderator MNDConnect's Avatar
    Join Date
    Mar 2016
    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:

    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

    I do hope this is helpful.

    Kindest regards,

  2. #12
    Forum Member
    Join Date
    Dec 2010
    Hi Prachi,

    Thank you very much for the reply. This is all very encouraging.

    I will indeed contact my GP to get in contact with a genetic counsellor again to see where we are up to at present. I was in fact enrolled on the 100,000 Genome Project and not the MinE Project. My mistake. I understand that the goals of the projects were similar and had access to powerful minds and technologies to progress results.

    Kindest regards
    Copyright Graham

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