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A Motor Neurone Gene Therapy that Works!

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  • LindaB
    replied
    Had my 1st follow up consultant consultation post diagnosis today and gene therapy trials mentioned...so I assume they're still looking for participants.

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  • Guy
    replied
    I would expect the C9orf trial will run like the similar SOD1 trial. If so, recruitment will be active before each ascending dose. At present they're probably only on the first, and lowest, dose. As Ellie says try to get your name on the list at the centres as it's likely to be on a first come, first served basis. After the initial trial period for SOD1, Biogen opened an extension trial for all participants with no placebo and maximum safe dose being used.

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  • Ellie
    replied
    Don't take it personally Evelyn! At least we won't reject you 😘

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  • EvelynMW
    replied
    Ellie Looks very similar to the one that rejected me.

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  • Ellie
    replied
    EvelynMW Recruitment was due to close last November, but Covid may have disrupted things, so it's definitely worth asking your neurologist and/or the 3 test centres listed.

    This is the trial, Evelyn, with inclusion/exclusion criteria: http://www.mndcsg.org.uk/mnd-clinica...c9orf72-trial/

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  • EvelynMW
    replied
    Guy Can people still be accepted?

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  • Guy
    replied
    Hi Evelyn I was thinking of the Biogen gene therapy trials (SOD1 and C9orf). SOD1 were only looking for fast progressors recently but I think they have stopped recruiting now and final results due later this year. C9orf trial is much more recent so should be some phased recruitment in the future I'd have thought. Results looking good, as you say!

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  • EvelynMW
    replied
    Guy Is that the trial started a while ago? There is another phase starting late April 2021 - i was told there would be no UK participants in the new phase. Still, looking good for us familials - in a few years maybe. ust gotta keep on keeping on.

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  • Guy
    replied
    the C9orf72 trial is running in London and Sheffield

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  • EvelynMW
    replied
    Graham I was referred or the C9orf72 trial, but my disease is (thank goodness) going too slowly! As far as i know, the current trial is going on with no UK repesentation

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  • Patw
    replied
    Thanks Graham x

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  • Graham
    replied
    Hi Pat,

    It is your consultant that should be sorting it out. Read the 'Riot Act', as if your life depends on it. There are trials taking place NOW for C9orF72. Of course you need to be gene tested first. You're entitled to a second opinion but do your homework or go private before opting back in to NHS. xx

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  • EvelynMW
    replied
    Patw I was referred to neurology after my nerve conduction tests and the neurologist sent of or 2 different types of blood test - 1 was specific to genetics, so i guess they looked or for all the known wwonky ones????

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  • Patw
    replied
    Thanks Barry x

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  • Barry52
    replied
    Hello Patw,

    You can find information about trials here https://www.mndassociation.org/research/

    I don’t believe that the NHS offers a genome test unless you are part of a study but you can pay for one privately. Beware that there are some dodgey deals on the internet.

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