Thread: ChinaSCINet Update

  1. #2591
    Let me know when you are coming, I'll give you hotel choices with Rutgers rate.

  2. #2592
    Thanks Jim, I'll certainly be in touch when the time comes.

  3. #2593
    Jim, we really can't thank you enough for always updating us on the latest news. I totally understand that there are many things out of Dr. Young's hands which is accounted for all the delay. However, we know for a fact that the phase two trials were a great step forward. I mean results that proved that chronic's are actually standing up, walking and gaining their Bowel, bladder and sexual functioning back is really unbelievable.


    I would just like you to confirm my understanding from the things you said previously in other threads about the second round of phase 2 trials that are going to take place in America and India.


    Question 1: since the trial in India is ahead, are you saying that if they start this spring there would be a chance that it will be available ( as a conditional use ) for people who are willing to pay for it maybe end of year in India?


    Question 2: The same as the above question but America instead of India. You're saying if all goes well, you could start the trial in America in the fall. Would it be safe to say that if the trial is successful, but would be able to pay for it and do it maybe beginning of 2018 also as a conditional use?


    Question 3: is the team expecting even better results especially for quadriplegics and upper body improvement in the next trail especially taking into consideration that they're planning more intensive exercise for upper body ( something similar to this 666 program) but for upper body?


    I hope you can answer these questions because it would shed some light about some very important points. It means that we don't really have to wait for the completion of the trial in 2019 or 2020.






  4. #2594
    Senior Member Wills77's Avatar
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    Has there been a change in spasticity? Were patients able to reduce baclofen?
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  5. #2595
    mT,

    - I'm not sure about compassionate use in India.

    - We have been told that as soon as the subjects are chosen for the US trial, the therapy will be available for expanded compassionate use. I would want to use one of the 3 surgeons in the trial, so will have to wait until they are done (few weeks).

    - We are hoping exercise will bring back hand/finger function, and to all muscles that are exercised. We will learn a lot from these trials.



    I'm not sure Wills.

  6. #2596
    Aren't there at least a dozen SCI treated so far? Are they allowed to speak publicly about it? It might be helpful if they can come out and show their new functions via a video.
    Last edited by Nowhere Man; 03-08-2017 at 08:23 PM.

  7. #2597
    Senior Member lunasicc42's Avatar
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    Quote Originally Posted by Nowhere Man View Post
    Aren't there at least a dozen SCI treated so far? Is there a gag order on them? It might be helpful if they can come out and show their new functions via a video. If I were an ASIA A (I am) who has regained the ability to walk with b,b,s improvements, I'd be on every news station bragging about the treatment, and showing off my regained functions to the world. Especially when its not just one person who could be misdiagnosed after injury, but 75% of patients.

    Jim, I always just assumed that the patients were under some agreement not to talk or go to the media until the trial is complete? Is that the case?
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  8. #2598
    Senior Member lunasicc42's Avatar
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    I am sure that this has been answered before on here but I forget what was said ...so there was no apparent way to distinguish between why some of the patients that were treated had a better degree of recovery than others?
    "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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  9. #2599
    Senior Member Wills77's Avatar
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    Quote Originally Posted by lunasicc42 View Post
    Jim, I always just assumed that the patients were under some agreement not to talk or go to the media until the trial is complete? Is that the case?
    I know with the trial I'm in they don't like people posting information about it on social media because they had an issue with a participant posting stuff that wasn't true. At first I would often get "in trouble" for taking pictures and videos of what we were doing but now that I've been working with them for so long they are more relaxed about it.
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  10. #2600
    Quote Originally Posted by Nowhere Man View Post
    Aren't there at least a dozen SCI treated so far? Are they allowed to speak publicly about it? It might be helpful if they can come out and show their new functions via a video.
    There were 28 treated in the ChinaSCINet trial. I don't think there are any restrictions on what they can say after the paper was published. When FDA approval is granted, videos may be released and Wise will probably be doing interviews.


    Quote Originally Posted by lunasicc42 View Post
    I am sure that this has been answered before on here but I forget what was said ...so there was no apparent way to distinguish between why some of the patients that were treated had a better degree of recovery than others?
    In the paper, look at the chart that breaks down the groups and what they received. Everyone in the group that received the max cells alone, all 'walked'. Time after injury, or para/quad designation didn't seem to make a difference. 15/20,75% walking is pretty incredible, but the % could be higher. 3 of the 5 that didn't walk were injured and had to stop training. 2 had leg fractures which old x-rays confirmed were present before the trial, and one had a knee injury. I'm not sure of the details of the 2 that didn't walk, or if they recovered bowel/bladder. Bringing all the subjects back for evaluation at 3 years was not a requirement of the trial, but that is what is being planned.

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