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Thread: Spinal Cord Injury Network USA (SCINetUSA)

  1. #671
    Senior Member lunasicc42's Avatar
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    Quote Originally Posted by lunasicc42 View Post
    I can never get an answer to this, but it's what I stay askin

    It's not like I am asking for that type of info now... I am just asking: "when do we get it?"
    "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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  2. #672
    [QUOTE=The mom;1880708]
    Quote Originally Posted by Jim View Post
    Hey Doug,

    "The chances are, the cord blood won't be useful for your grand child's parents, or you. The great thing about umbilical cord blood is that it can be matched just like blood. I would bank it for your grandchild."

    We have stored and are paying for umbilical cord blood and tissue from 2 babies from 2 different families and are expecting a third at the end of the year. Stemcyte understood that we were storing for our son, a C6-7 Asia A. Do I understand that this will not work as an option for my son when we get to the point of compassionate use, if it were to match?

    I understand from Stemcyte when the second unit was stored, that this blood and tissue could not be made available to others if it were not to be a match for my son? My hope was that in the same manner as organ transplants..., that multiple families with sometimes different organs, might align for umbilical cord blood swaps to make available matched stem cells for those in need. Is this being considered?
    Thank you, Jim!
    You should contact StemCyte to find out. If you have cord blood banked with them, I don't see why there would be an issue with swapping for a matching unit.


    Quote Originally Posted by spayne View Post
    Are there any plans to do Vlogs of the individuals as they are walking during the upcoming study?
    It is obvious that someone overlooked that very critical piece in the prior work done in China hopefully the mistake won't be repeated again.
    Overlooked what? You can't report on the progress of a subject taking part in a clinical trial. It is up to the investigators to conduct exams and gather data during the trial. I made the mistake of talking about the subjects during the China trial. I will not make that mistake again.

    Quote Originally Posted by lunasicc42 View Post
    It's not like I am asking for that type of info now... I am just asking: "when do we get it?"
    Luna, I don't know if or when the videos of the walkers will be shown. Wise shows them at Open Houses and when he gives talks. We haven't publicized this trial at all. Our focus is on getting it started and doing it right.

  3. #673
    Senior Member lunasicc42's Avatar
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    [QUOTE=Jim;1881102]
    Quote Originally Posted by The mom View Post

    You should contact StemCyte to find out. If you have cord blood banked with them, I don't see why there would be an issue with swapping for a matching unit.




    Overlooked what? You can't report on the progress of a subject taking part in a clinical trial. It is up to the investigators to conduct exams and gather data during the trial. I made the mistake of talking about the subjects during the China trial. I will not make that mistake again.



    Luna, I don't know if or when the videos of the walkers will be shown. Wise shows them at Open Houses and when he gives talks. We haven't publicized this trial at all. Our focus is on getting it started and doing it right.

    OK I see. I just Totally think that if certain aspects of the successes and potentials of this trial were better known publicly, it would bring more awareness; and therefore more funds, instead of awareness throughout only "our" community
    "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
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  4. #674
    If the US/India/Taiwan trials have similar results to those in ChinaSCINet trial, then we will have something to publicize.

  5. #675
    Luna, I don't know if or when the videos of the walkers will be shown. Wise shows them at Open Houses and when he gives talks. We haven't publicized this trial at all. Our focus is on getting it started and doing it right.
    Are the videos posted somewhere here?
    Last edited by Jim; 06-28-2019 at 09:39 PM. Reason: fixed quote

  6. #676
    The videos have been shown publically, but not put on the web.

  7. #677

    vlog

    Quote Originally Posted by Jim View Post
    The videos have been shown publically, but not put on the web.


    Yes, I can fully understand that publishing video during a scientific study could be significantly misleading and potentially introduce an additional variable that would be difficult to account for the impact to all the existing participants if they had awareness.

    So let me clarify my original question. Will video data be collected throughout the study to be published after the trial?


    let me say I'm not trying to impugn the truthfulness, accuracy, character or integrity of anyone associated with the prior work or work going forward.

  8. #678
    Quote Originally Posted by spayne View Post
    Will video data be collected throughout the study to be published after the trial?
    I don't know, but will add this to the list to be asked at the Open House.

  9. #679
    Quote Originally Posted by Jim View Post
    The videos have been shown publically, but not put on the web.
    why not?

  10. #680
    Senior Member lunasicc42's Avatar
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    Quote Originally Posted by jscrog View Post
    why not?

    I, of course can't Totally agree due to my "connection" to this spinal cord injury trial but I understand and am led to believe something like: certain results can't be made public before official publication because it can damage the validity of the trial and in the future; the chance to get the procedure covered by insurance... I may be mistaken but that is what I always thought
    "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

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