Thread: ChinaSCINet Update

  1. #2411

  2. #2412
    Senior Member Moe's Avatar
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    Nice, It's finally out!

  3. #2413
    Senior Member lunasicc42's Avatar
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    congrats but wise himself has stated that this therapy isn't a cure or the end of what he wants to do...so does he know what type of therapy is next for him and the SCI network ...
    "That's not smog! It's SMUG!! " - randy marsh, southpark

    "what???? , you don't 'all' wear a poop sac?.... DAMNIT BONNIE, YOU LIED TO ME ABOUT THE POOP SAC!!!! "


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  4. #2414
    Quote Originally Posted by niallel View Post
    Congratulations on getting it published, this seems like great news and gives us all some hope that something can be done.

    Couple of questions if I may, it says that some were able to empty their bladder without a catheter. I take it that means they could activate the muscles to empty the bladder?

    The question really is did they know when their bladder was full?
    Using an intermittent catheter isn't the end of the world, the problem is knowing when to do it.

    I suppose the same question regarding the bowels, do they know when they need to go to the toilet?
    The document says that accidents were reduced/eliminated - so that sort of suggests that they knew when they needed to empty. Is that correct?
    It is my understanding that they are tapping on their bladders in order to go. I have been doing this for 20 years and emptying my bladder, no UTI's. I'm not sure about sensation or about bowels. They are planning to bring all the patients back for examinations so they get get the facts about what is really going on.

    This was a Phase II Safety Study with unexpected results. The trial will soon be repeated in India and the US. Now that we know what to expect we will be be able to analyze the changes more precisely.

  5. #2415
    Thanks Jim, its great to know there are gains whatever they are.

  6. #2416
    Quote Originally Posted by niallel View Post

    The question really is did they know when their bladder was full?
    Using an intermittent catheter isn't the end of the world, the problem is knowing when to do it.
    Why does this have to be so hard?

    You are correct it's about knowing when.

    Its amazing that there is no device to help with alerting it.

  7. #2417
    Congratulations and thank you for the hard work! I am so happy!

    What's the next step? I know Jim said the trial will be done again, but how many more trials after that? Or will treatment be available after/during the ones in the US and India?

  8. #2418
    The Phase IIb may start by the end of the year in the US. My understanding is once all 27 patients are enrolled, the treatment will be eligible for expanded compassionate use to anyone.

  9. #2419
    Senior Member lunasicc42's Avatar
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    Quote Originally Posted by Jim View Post
    The Phase IIb may start by the end of the year in the US. My understanding is once all 27 patients are enrolled, the treatment will be eligible for expanded compassionate use to anyone.

    Nice
    "That's not smog! It's SMUG!! " - randy marsh, southpark

    "what???? , you don't 'all' wear a poop sac?.... DAMNIT BONNIE, YOU LIED TO ME ABOUT THE POOP SAC!!!! "


    2010 SCINet Clinical Trial Support Squad Member
    Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature

  10. #2420
    Quote Originally Posted by Jim View Post
    The Phase IIb may start by the end of the year in the US. My understanding is once all 27 patients are enrolled, the treatment will be eligible for expanded compassionate use to anyone.
    AAAAAARRRRRRRRGHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH HHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH!!!!

    LOL I get excited too soon. Thanks you guys.

    Will the treatment be applicable to those who have developed syringomyelia after injury? If not in the compassionate use stage, then atleast in the distant future?

    The reason I ask is alot of trials have exclusion criteria and even mention disqualification due to syrinxes/cysts.

    Of course it makes sense that this only to eliminate variables initially. I'm also kind of worried how I will respond to the syringo-pleural shunt being removed... unless it can stay in.

    Woohoo!
    Warmest Regards

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