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Thread: Dr. Young: could you please elaborate on this statement

  1. #1

    Dr. Young: could you please elaborate on this statement

    That you made in the "Conus Medullaris Injuries" thread: "Third, we are finding strong evidence of walking, bladder, and bowel recovery in patients treated with umbilical cord blood mononuclear cells."
    I was under the impression that the recent ChinaSCINet trials were not collecting systematic data on bladder and bowel recovery... did this strong evidence come out of survey data? While I'm sure you wouldn't want to talk too much about the data itself, maybe you could speak qualitatively as to the type of gains in bowel and bladder function that the trial participants were experiencing. Thank you.

  2. #2

  3. #3
    Dr. Young hasn't had any time to get on.

    If/when he gets on he may want to say more but this is what I said in another thread- Changes in bowel/bladder were documented in the data collection at different time points in the trial.

  4. #4
    Quote Originally Posted by Wise Young View Post
    Barrington314, we did not collect BBS data in the trial. There are questions concerning bowel and bladder in the SCIM (spinal cord independence measure) that was collected but these are subjective responses from the patients. We do not plan to bring the patients back for BBS examinations. Wise.
    This was Dr. Young's post from last October.

  5. #5
    Quote Originally Posted by Jim View Post
    Dr. Young hasn't had any time to get on.

    If/when he gets on he may want to say more but this is what I said in another thread- Changes in bowel/bladder were documented in the data collection at different time points in the trial.
    Jim, you also said in that post that it would be months (which, if history serves as an example, could be closer to a year perhaps) until the data is released as a part of a published paper.
    Fine. OK. Things take time. But I can't for the life of me figure out why you and and Dr. Young would say suggestive yet vague things such as what is above if it will be many many months until anyone can see what is actually meant by these statements. The only thing I can think of is that these leaks are to string people along and maintain interest in the trial, for whatever reason. I don't know if that's the best, most honest way to communicate what is going on with the trial to people who are trying to follow it.

  6. #6
    I don't believe it will be many, many months.
    String people along to maintain interest? We have nothing to gain by strining people along, the results are the same in the end. It doesn't matter if everyone forgets about the trial until it is published. The truth is, Wise and I are a part of this community, are excited about the results, and want to share what we can with the people it matters to. There is no ulterior motive.

  7. #7
    Quote Originally Posted by Jim View Post
    I don't believe it will be many, many months.
    String people along to maintain interest? We have nothing to gain by strining people along, the results are the same in the end. It doesn't matter if everyone forgets about the trial until it is published. The truth is, Wise and I are a part of this community, are excited about the results, and want to share what we can with the people it matters to. There is no ulterior motive.
    Yea, I thought that might be it too. You're just very excited about the results and can't help but give some info to the community. But as a part of the community, you should also realize that messaging matters. And clear information matters. Browsing past posts in this forum itself is a great way to see how hype often trumps content and can really, quickly, and perhaps unjustifiably raise the hopes of the community. And then.... disappointment.
    When you say something like "patients are walking" or "there is strong evidence of return of bowel and bladder function" you better hope the data does in fact support such strong claims. But in any event, the data will speak for itself. So, in my opinion, it's better to not say anything until you can say something concrete and back it up.

  8. #8
    Understand your concerns with regard to spreading false hope but the statements I made are based on the trial data/videos. I have no "skin in the game" to hype this trial. I have been a member of this community for 18 years and would never mislead my comrads. If this therapy didn't show effectiveness in phase II, we would say so and move on to the next most promising therapy/combo (which is being planning.) The path forward is to discover a therapy that improves lives, make it a standard of care, then find something that is more effective. This is the path to the cure.

  9. #9
    Quote Originally Posted by Jim View Post
    Understand your concerns with regard to spreading false hope but the statements I made are based on the trial data/videos. I have no "skin in the game" to hype this trial. I have been a member of this community for 18 years and would never mislead my comrads. If this therapy didn't show effectiveness in phase II, we would say so and move on to the next most promising therapy/combo (which is being planning.) The path forward is to discover a therapy that improves lives, make it a standard of care, then find something that is more effective. This is the path to the cure.
    Some people may think that you are not providing these leaks to string people along and maintain interest in the trial but to fill the time gap from here to when the next most promising therapy/combo will be ready.
    If the results are as exciting as you and Wise suggest, why would you be planning the next most promising therapy/combo instead of just focus your work on the phase III trial in China and the Phases II in US & Europe?

    Paolo
    Last edited by paolocipolla; 05-31-2014 at 09:01 AM.
    In God we trust; all others bring data. - Edwards Deming

  10. #10
    Senior Member khmorgan's Avatar
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    Quote Originally Posted by Jim View Post
    Understand your concerns with regard to spreading false hope but the statements I made are based on the trial data/videos. I have no "skin in the game" to hype this trial. I have been a member of this community for 18 years and would never mislead my comrads. If this therapy didn't show effectiveness in phase II, we would say so and move on to the next most promising therapy/combo (which is being planning.) The path forward is to discover a therapy that improves lives, make it a standard of care, then find something that is more effective. This is the path to the cure.
    Thanks, Jim. Some people understand that you are trying to deliver early results without being able to promise what the end result will be. Also, most of us understand that there is no magic bullet cure, i.e. one treatment and you are whole again. Any practical treatment will likely be a combination of several different treatments currently under research.

    Of course, some here have a different, non-productive agenda, which is their right as long as everyone understands their goal.

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