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Thread: Dexpramipexole Clinical Trial

  1. #11
    Forum Member Chris's Avatar
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    Had a call today to say everything has come back ok and to go next wednesday baseline visit/study day 1. I wont keep posting how things go on here as i have seen negative comments made about the criteria of the trial elsewhere so i dont want to look like i'm rubbing in peoples faces who are unfortunatley unable to get on it. I will continue my route through the trial on my website blog.
    YNWA............Trying to stay positive..........

    Website http://chris-versus-mnd.weebly.com/

  2. #12
    Forum Member G60dubber's Avatar
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    That's great news. Will be interested to hear how things go. I spoke with Prof Shaw today and I'm being put forward for this too. Got 95% on my blow test and 94 on sniff test so lungs strong enough to continue :-). Just hope all else ok.
    Life without love is like a broken pencil..... Pointless.

    http://mndestroyer.wordpress.com/

  3. #13
    Forum Member Chris's Avatar
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    Good luck, im sure you will get on.
    YNWA............Trying to stay positive..........

    Website http://chris-versus-mnd.weebly.com/

  4. #14
    Forum Member jadedjohn's Avatar
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    im still waiting, oxford have not yet recruited yet - but they are saying preference is given to people who live locally - stinks really!!
    http://www.jaded-john.net

    First onset Oct 2009, Dx'ed Oct 2010 at the age of 42

  5. #15
    Forum Member G60dubber's Avatar
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    Why should distance make a difference???, if you're prepared to travel to see them then they shouldn't disciminate against you.
    Life without love is like a broken pencil..... Pointless.

    http://mndestroyer.wordpress.com/

  6. #16
    Forum Member MattJ's Avatar
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    The reason for recruiting locally is because the trial nurses are hoping to visit your home every other month. Read the section titled "About the new phase 3 trial" on the link below:

    http://alsn.mda.org/news/phase-3-tri...e-launched-als

  7. #17
    Forum Member G60dubber's Avatar
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    Cheers Matt, you're a wealth of info :-)
    Life without love is like a broken pencil..... Pointless.

    http://mndestroyer.wordpress.com/

  8. #18
    Forum Member jadedjohn's Avatar
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    Matt - you omitted this bit

    " In cases where travel to the clinic becomes too difficult, individuals can continue to participate in the trial, with all monthly assessments conducted via phone and by a home health nurse."

    john
    http://www.jaded-john.net

    First onset Oct 2009, Dx'ed Oct 2010 at the age of 42

  9. #19
    Forum Member MattJ's Avatar
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    Hi John,

    I think that statement is to cover someone who is initially able to attend the bi-monthly clinic visits, but at some point, it then becomes to difficult for them travel, rather than having the option of home visits from day one.
    Last edited by MattJ; 9th June 2011 at 12:03.

  10. #20
    Forum Member MattJ's Avatar
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    Interesting article about Colm Murray, one of the first people to take part in the Dexpramipexole trial.

    http://www.irishtimes.com/newspaper/...298853531.html

    Also, first time I've read a comment from a Professor of Neurology that this drug could potentially turn the disease from a fatal condition to a chronic one. Strong words indeed.

    Hardiman says few drugs to treat MND have generated such interest or optimism and it (Dexpramipexole) had the ability to turn the condition from a fatal to a chronic one that can be managed over time.
    I wonder what's the shortest time frame in order to have enough data that could show whether this drug truly has the potential to slow progression? Say for example it show this within 6 months ... the next question is how quickly can they provide this drug to patients? This then leads to how much!
    Last edited by MattJ; 14th June 2011 at 10:20.

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