Thread: ChinaSCINet Update

  1. #1601
    Quote Originally Posted by Wise Young View Post
    She was not one of the patients in our study and therefore did not receive our umbilical cord blood cell therapy. To my knowledge, she received decompression and untethering surgery. I presented the case because it was one of the reasons why we decided to include an untethering control group to our planned phase III trial.

    Wise.
    Sorry if I over looked it, but how long after injury did she have the untethering surgery? Is there a point in which its "been too long" to have a successful untethering?

  2. #1602
    fti,
    just watch the video , Dr. Young is talking about her situation and her progress.

  3. #1603
    I'm a little confused that there aren't any motor or sensory improvements at six months (and maybe it will be shown that indeed there were some when the data is fully analyzed and released) and mostly because this thread contains MANY times where someone associated with the trial or carecure (either Dr. Young or Jim relaying information from him) states that some patients seemed to be getting increased sensation, "more and better improvement in sensory and motor scores", etc. Some of these claims go back to shortly after the first patients were given the treatment, some are as recent as a couple months ago. So I don't really understand what is going on here... Did those things never happen? Were they reported by patients but then failed to show through in more rigorous neurological analysis? I fully realize Dr. Young has repeatedly said time and again that its too early to say the treatment is effective, even things that happen (the truly amazing locomotor improvement) have not been shown to be due to the treatment, etc. but either these things happened or not. Or is this standard, that for example changes in sensation could occur and leave before the time to analyze the patients?
    I'd also appreciate if noone responded saying that I am being impatient, demanding too much, want the trial to fail, wasting Dr. Young's time or something like this. I am wholly invested in this trial succeeding and hope it will bring good things for all of us. I just think this discrepancy is something that warrants a question. Thanks as always!

  4. #1604
    Senior Member lunasicc42's Avatar
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    Quote Originally Posted by ay2012 View Post
    I'm a little confused that there aren't any motor or sensory improvements at six months (and maybe it will be shown that indeed there were some when the data is fully analyzed and released) and mostly because this thread contains MANY times where someone associated with the trial or carecure (either Dr. Young or Jim relaying information from him) states that some patients seemed to be getting increased sensation, "more and better improvement in sensory and motor scores", etc. Some of these claims go back to shortly after the first patients were given the treatment, some are as recent as a couple months ago. So I don't really understand what is going on here... Did those things never happen? Were they reported by patients but then failed to show through in more rigorous neurological analysis? I fully realize Dr. Young has repeatedly said time and again that its too early to say the treatment is effective, even things that happen (the truly amazing locomotor improvement) have not been shown to be due to the treatment, etc. but either these things happened or not. Or is this standard, that for example changes in sensation could occur and leave before the time to analyze the patients?
    I'd also appreciate if noone responded saying that I am being impatient, demanding too much, want the trial to fail, wasting Dr. Young's time or something like this. I am wholly invested in this trial succeeding and hope it will bring good things for all of us. I just think this discrepancy is something that warrants a question. Thanks as always!
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  5. #1605
    Quote Originally Posted by paolocipolla View Post
    The individual does not seem like an ASIA A complete to me (and also to few PTs that have seen the video). I hope you don't mind me asking.

    Paolo
    I see what you are doing here. You are going to spin this around and try to confuse people.
    You know what is going on, now you are just being a smart ass.

  6. #1606
    Quote Originally Posted by paolocipolla View Post

    Paolo
    I like everyone cannot wait to hear the true results if this trial and truly feel we would know more info and seen more about it if certain people would just go away.

  7. #1607
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    I know that I am likely to get a fall from this but as things seem to be progressing I cannot help but have a positive outlook the way developments have occurred during the last few years, in regards to potential cures and therapy’s etc.

    Dr Wise I know your going to start phase 3 soon. Could I ask as to when and for how long until the final phase (I assume) being four, will begin and end?. And how long will it take before the rest off us can participate in the treatment? If possible.

    Do you think that your therapy and others will be applicable to most of us by 2020? Or later like 2030.

    Thank-you for all your help

  8. #1608
    Quote Originally Posted by Barrington314mx View Post
    Sorry if I over looked it, but how long after injury did she have the untethering surgery? Is there a point in which its "been too long" to have a successful untethering?
    Barrington,

    I was just explaining to the audience in the Open House that we have made a decision to include surgical decompression and untethering as the control rather than use a non-surgical control. The case has not been published and I believe that the Kunming group is planning to publish the case. I presented the case only to point out that decompression and untethering may restore function even in a very severe case of spinal cord injury. The Kunming group is now collecting all the data that they have from untethering surgery over the years and I am encouraging them to publish the data.

    Many surgeons have reported anecdotal cases of improved function after delayed decompression and untethering surgery. I have described such cases in the past. For example, Hank Bohlman at Case Western Reserve in Cleveland published series of surgical cases where he decompressed and untethered the spinal cord up to several years after injury. He suggested that it needed to be done within 3 years and that he did not see as much recovery at longer times. Note that these were all decompression cases, where the spinal cord was still being compressed. I have posted abstracts of these papers in past on the forum before.

    So, the concept that decompression and untethering surgery may be beneficial is not new. We decided to propose to the principal investigators of the ChinaSCINet to make the control group of the phase III trial into an untethering surgery as opposed to a no-surgery control. Please note that it is possible that our investigators may decide that this would not be an acceptable option, i.e. they may say that untethering on its own is unlikely to be beneficial and they do not want to subject their patients to the surgical risk. Or, they may think that it is a good idea. We shall see. We are holding the principal investigator meeting on March 2-3.

    Wise.

  9. #1609
    Senior Member lunasicc42's Avatar
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    wise, based what you see concerning efficacy in these trials, are you guys still motivated to move this therapy to higher level chronics? And if so: whats the proposed timeframe? Has it changed or been altered?

    Because I would think that if this shows efficacy in the lower level injuries, the trial for higher injuries might be accelerated...

    And also when will you be able to comment surely on b/b/b?
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  10. #1610
    ay2012,

    At the risk of repeating myself, the fact that there is no change in motor and sensory scores does not mean that there has been no improvement in motor or sensory function. There have also been some changes in motor and sensory scores of some patients but this particular patient did not have any change in his scores. There is no contradiction between these statements.

    Let me try again. Motor and sensory scores represent specific voluntary function. The examination is done with the subject lying down and the examiner asks the subject to move specific muscles, such as the knee extensors (quadriceps) or ankle extensors (gastrocnemius) against resistance, etc. The strength of each muscle is scored. The examiners also pokes a pin or touch each dermatome and asks the subjects whether or not he can feel the pin, whether it is sharp or not, etc.

    As I have said repeatedly, we are finding that subjects can walk like the video shown without showing improvements in voluntary movement of individual muscles or feeling pinprick or touch in their legs. I have already explained that I think that the recovery of function is a result of the subjects being able to activate their central pattern generator (CPG). The fact that they can activate their CPG does not mean that they are able to activate the individual muscles directly or that they are able to feel the parts of their legs.

    I have not looked at this particular subject's neurological scores in detail. I only know that this subject did not show big changes in his scores. When we publish the data, we will do the detailed correlation. I don't mind being asked questions and I answer them to the best of my ability but I hope that people will be patient. I cannot and will not present detailed scores of individual subjects.

    Finally, I want to emphasize that I am hoping that these individuals will eventually recover motor and sensory scores in their legs. As the MRI/DTI suggests, the growth across in injury site is very slow. At 6 months, they are barely reaching across the injury site and they may not have reached far enough to the distal spinal cord or brainstem to result in voluntary activation of muscles or ability to feel pinprick or touch.

    Wise.



    Quote Originally Posted by ay2012 View Post
    I'm a little confused that there aren't any motor or sensory improvements at six months (and maybe it will be shown that indeed there were some when the data is fully analyzed and released) and mostly because this thread contains MANY times where someone associated with the trial or carecure (either Dr. Young or Jim relaying information from him) states that some patients seemed to be getting increased sensation, "more and better improvement in sensory and motor scores", etc. Some of these claims go back to shortly after the first patients were given the treatment, some are as recent as a couple months ago. So I don't really understand what is going on here... Did those things never happen? Were they reported by patients but then failed to show through in more rigorous neurological analysis? I fully realize Dr. Young has repeatedly said time and again that its too early to say the treatment is effective, even things that happen (the truly amazing locomotor improvement) have not been shown to be due to the treatment, etc. but either these things happened or not. Or is this standard, that for example changes in sensation could occur and leave before the time to analyze the patients?
    I'd also appreciate if noone responded saying that I am being impatient, demanding too much, want the trial to fail, wasting Dr. Young's time or something like this. I am wholly invested in this trial succeeding and hope it will bring good things for all of us. I just think this discrepancy is something that warrants a question. Thanks as always!
    Last edited by Wise Young; 02-08-2013 at 08:47 PM.

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