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Thread: Spinal Cord Injury Network USA (SCINetUSA)

  1. #691

    Trial selection

    If I'm selected to participate in the trials. Will I be allowed to view the video before undergoing surgery?

  2. #692
    Quote Originally Posted by spayne View Post
    If I'm selected to participate in the trials. Will I be allowed to view the video before undergoing surgery?
    I don't see why not.

    Summer Open House Report- http://www.icontact-archive.com/arch...cd3f59ef7b74ad

  3. #693
    Senior Member lunasicc42's Avatar
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    Is there any chance that C4's won't get operated on or should I not worry?
    "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. #694
    C4's will not be in this trial.

  5. #695
    Senior Member lunasicc42's Avatar
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    Quote Originally Posted by Jim View Post
    C4's will not be in this trial.
    naw, I know that. I mean in an upcoming trial is there any possibility that C4's will not be able to be operated on due to the phrenic nucleus? ... And approx how long do you think it will take until the separate trial for high quads can commence? I mean will I be waiting the full duration of this initial trial of patients up to C5 to complete or might the trial for upper injuries be able to Initiate within that time
    "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

  6. #696

    Why just the WISCI to measure walking????

    Quote Originally Posted by Jim View Post
    I don't see why not.

    Summer Open House Report- http://www.icontact-archive.com/arch...cd3f59ef7b74ad
    I read the NOTES from the open house.

    Proposed Phase II clinical trial
    ● Randomized controlled three arm study of UCBC transplant into injured spinal cord with
    lithium carbonate or placebo, followed by locomotor training in treatment of chronic
    complete SCI.
    ● Outcome measures:
    Primary outcome measures include Walking index of SCI score (WISCI)
    Secondary outcome measures include SCIM scores.

    Why just the WISCI to measure walking????

    https://scireproject.com/outcome-mea...-2c29ca8d-88af

    ""Clinical Considerations
    There is minimal additional burden for clinicians to administer the WISCI as the test falls into typical clinical practice parameters.
    A score is possible even if the individual cannot walk 10 m. However, because the furthest walk distance is 10m, it may not be suitable for individuals with minor impairments.

    It would be a useful to incorporate the WISCI II into clinical practice and to evaluate new SCI therapies. Additional tests may be necessary to assess endurance (e.g. 6MWT) and/or walking speed (eg.10MWT), especially for individuals with greater walking capacity. ""

    WHY NOT THE SPEED AND EFFORT??????

    What is the C in e=mc2?

    In one of Albert Einstein?s revolutionary scientific papers published in 1905, E=mc2 was introduced; where E is energy, m is mass, and c is the speed of light in a vacuum.

  7. #697
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    Hello Jim, I see Kessler is picked for an interviewing site, Will they post how we can sign up? Thank you

  8. #698
    Senior Member lunasicc42's Avatar
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    Quote Originally Posted by JoeMonte View Post
    Hello Jim, I see Kessler is picked for an interviewing site, Will they post how we can sign up? Thank you
    Jim said that when recruitment begins it will be posted here for sure
    But you probably want to hear that from him, lol thats the way I am regarding trial info
    "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

  9. #699

    Page 9 Open house notes

    Quote Originally Posted by lunasicc42 View Post
    naw, I know that. I mean in an upcoming trial is there any possibility that C4's will not be able to be operated on due to the phrenic nucleus? ... And approx how long do you think it will take until the separate trial for high quads can commence? I mean will I be waiting the full duration of this initial trial of patients up to C5 to complete or might the trial for upper injuries be able to Initiate within that time
    Lunascic42 ?. this might answer your question ? but it takes so long my guess 2022

    What is the timeframe from one wave to the next? To the next trial?

    Dr. Young: Anticipating the patients will be done two weeks apart in each center.

    We haven?t planned all the next trials yet. There?s a phase 3 that will probably occur at the end of
    2020. US, Europe, China, and India.

    Before or during this time, want to do three Phase 2 studies to expand the indications: 8-17 children,
    65-80 older adults, incompletes, and maybe 4th one: cervical spinal cord injuries, injecting lower
    and into the lesion.)

  10. #700
    Senior Member lunasicc42's Avatar
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    Quote Originally Posted by spayne View Post
    Lunascic42 ?. this might answer your question ? but it takes so long my guess 2022

    What is the timeframe from one wave to the next? To the next trial?

    Dr. Young: Anticipating the patients will be done two weeks apart in each center.

    We haven?t planned all the next trials yet. There?s a phase 3 that will probably occur at the end of
    2020. US, Europe, China, and India.

    Before or during this time, want to do three Phase 2 studies to expand the indications: 8-17 children,
    65-80 older adults, incompletes, and maybe 4th one: cervical spinal cord injuries, injecting lower
    and into the lesion.)
    If that turns out to be the reality, that is actually a Bummer
    Ideally I am hoping that the procedure can get fasttracked to C4's quicker, even if it's under compassionate use which I think one might have to pay for... I dunno, I am just trying to go through all these possible situations in my head and figure a way in which I can finnagle myself into the operating room, I have been getting increasingly frequent and bad Uti's and one went septic so I need this to stop and now time is really of the essence, my health was actually pretty stable despite sci but now it seems like I am getting more fragile and need a treatment to circumvent that
    "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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