Thread: ChinaSCINet Update

  1. #1411
    Quote Originally Posted by Wise Young View Post
    As I said, I have not yet decided. Wise.
    Couldn't releasing or not releasing information impact the ability of you or others to raise funds for the trials?

  2. #1412
    Quote Originally Posted by ay2012 View Post
    Was your mind changed because of the backlash/questioning that came when you provided the last personal observations? The fact that you keep us in the loop and the access you give of yourself to our questions and concerns is, as you note, not common....but its also a reason, among others, why so many throw our support behind your work.
    ay2012, I simply have not decided.

    Let me review what happened. I had earlier provided general comments about the results when I announced that we will go ahead to do Phase III trials because our phase I/II trials indicate that the therapy is safe and some patients have shown improved locomotor function. This was greeted with great interest by many people and disbelief by some people, who went as far as to suggest that I am providing confusing information in order to raise more money for the trials.

    Last month, I was giving a talk to other scientists in the New Bedford workshop about the obstacles and lessons we have learned from clinical trials. I pointed out two interesting findings in our trial, i.e. that we are seeing white matter regrowth in some patients and that improved locomotor function can occur without significant changes in motor and sensory scores. This led to a spirited discussion that I hope helped the community understand some of the mechanisms of recovery from regeneration.

    I have stated many times that I will not provide detailed trial data and that people would have to wait until publication for such data. In addition, I also said many times that I did not believe that even the 6-month data would be sufficient to show that umbilical cord blood cell transplants is effective or not. Despite my repeated assertions that it is too early to say anything definitive about efficacy of umbilical cord blood transplants, many people have been jumping to unwarranted conclusions that umbilical cord blood mononuclear cell transplants are not effective.

    Some people have dismissed the therapy because people are not walking at 6-12 weeks. So, clearly, releasing the 6-month data can lead to misconceptions by the community. At the present, I am unsure that the benefits of releasing the 6-month data are sufficient to counter the misconceptions.

    Lyerly, are you suggesting that people would stop supporting the trial if the information suggests that the treatment seem to be ineffective at 6 months? Or, if the results seem positive, people would give more money? If so, that would be a terrible shame for the following reasons:
    1. The 6-month outcomes are still too early to say whether the treatment is or is not effective.
    2. "Negative" results are as important as "positive" results.
    3. People should be supporting the trials regardless of the results.



    Wise.
    Last edited by Wise Young; 12-20-2012 at 07:58 PM.

  3. #1413
    Lyerly, are you suggesting that people would stop supporting the trial if the information suggests that the treatment seem to be ineffective at 6 months? Or, if the results seem positive, people would give more money? If so, that would be a terrible shame for the following reasons:
    1. The 6-month outcomes are still too early to say whether the treatment is or is not effective.
    2. "Negative" results are as important as "positive" results.
    3. People should be supporting the trials regardless of the results.



    Wise.[/QUOTE]

    I was thinking that positive results would lead to increased donations with possibly positive press. I think it would be easier to gain support for something that is known to potentially have significant and maybe even visible improvement.

    I think it would be easier to convince people to donate to something they have expectations for as opposed to just donating to research in general.

  4. #1414
    Lyerly,

    In my opinion, people should support clinical trials. Their support should not depend on whether the trials are trending positive or negative. They should not be fair-weather friends who support trials only when they think that it is showing positive results and drop their support when the trials are not showing positive results. Negative results are important also.

    Lest somebody think that I am suggesting that our trial results are negative, let me say that I am sufficiently optimistic that the trials will show positive results to have committed to doing a phase III trial in 2013. By the way, if anybody thinks that I am willing to spend the next several years working my butt off and raising millions of dollars to do clinical trials on a therapy that I don't believe will work, they are absolutely wrong.

    I am undecided about whether and how to present the 6-month data on CareCure. For example, if I say that patients are walking, people will demand that I present videos. If I showed videos of walking patients, I will likely be severely criticized for presenting anecdotal data to raise money for the trials, which would be true. If I presented the detailed data and the analyses, it may jeopardize publication of the data in a good journal. It is not an easy decision.

    Wise.


    Quote Originally Posted by Lyerly View Post
    Quote Originally Posted by Wise Young
    Lyerly, are you suggesting that people would stop supporting the trial if the information suggests that the treatment seem to be ineffective at 6 months? Or, if the results seem positive, people would give more money? If so, that would be a terrible shame for the following reasons:
    1. The 6-month outcomes are still too early to say whether the treatment is or is not effective.
    2. "Negative" results are as important as "positive" results.
    3. People should be supporting the trials regardless of the results.

    Wise.
    I was thinking that positive results would lead to increased donations with possibly positive press. I think it would be easier to gain support for something that is known to potentially have significant and maybe even visible improvement.

    I think it would be easier to convince people to donate to something they have expectations for as opposed to just donating to research in general.
    Last edited by Wise Young; 12-20-2012 at 09:55 PM.

  5. #1415
    Wise:
    Please hold on to the data and keep it from this site. Publication is much too important to worry about what some on this forum will think or wonder. That is all that they have is time to wait for the publication. If you detail that info here you will be bombarded with question and what if's that will take your time away from the goal.

  6. #1416
    Seems like a no-brainer. You need millions in funding which would be much more contingent on a well received article in a peer-reviewed journal than presenting any form of the results to people who either see your dedication and will support you regardless of if you present the data or people who for some reason have a personal grudge against you and will find fault with whatever you post.

    As a researcher you are in a very unusual position in that you have a large website related to your work. if people can google and see even partial results of your trials they may see no point in publishing them in their journal.

    Quote Originally Posted by Wise Young View Post
    Lyerly,

    In my opinion, people should support clinical trials. Their support should not depend on whether the trials are trending positive or negative. They should not be fair-weather friends who support trials only when they think that it is showing positive results and drop their support when the trials are not showing positive results. Negative results are important also.

    Lest somebody think that I am suggesting that our trial results are negative, let me say that I am sufficiently optimistic that the trials will show positive results to have committed to doing a phase III trial in 2013. By the way, if anybody thinks that I am willing to spend the next several years working my butt off and raising millions of dollars to do clinical trials on a therapy that I don't believe will work, they are absolutely wrong.

    I am undecided about whether and how to present the 6-month data on CareCure. For example, if I say that patients are walking, people will demand that I present videos. If I showed videos of walking patients, I will likely be severely criticized for presenting anecdotal data to raise money for the trials, which would be true. If I presented the detailed data and the analyses, it may jeopardize publication of the data in a good journal. It is not an easy decision.

    Wise.

  7. #1417
    I know that if I was raising money for something that has a good chance that will benefit me or even a proven or documented chance that it would be easier. It gives the donor something to see that there investment lead towards and would make them more comfortable and generous knowing the chances of improvement are high as opposed to just giving in general.

    Quote Originally Posted by Wise Young View Post
    Lyerly,

    In my opinion, people should support clinical trials. Their support should not depend on whether the trials are trending positive or negative. They should not be fair-weather friends who support trials only when they think that it is showing positive results and drop their support when the trials are not showing positive results. Negative results are important also.

    Lest somebody think that I am suggesting that our trial results are negative, let me say that I am sufficiently optimistic that the trials will show positive results to have committed to doing a phase III trial in 2013. By the way, if anybody thinks that I am willing to spend the next several years working my butt off and raising millions of dollars to do clinical trials on a therapy that I don't believe will work, they are absolutely wrong.

    I am undecided about whether and how to present the 6-month data on CareCure. For example, if I say that patients are walking, people will demand that I present videos. If I showed videos of walking patients, I will likely be severely criticized for presenting anecdotal data to raise money for the trials, which would be true. If I presented the detailed data and the analyses, it may jeopardize publication of the data in a good journal. It is not an easy decision.

    Wise.

  8. #1418
    While people should support clinical trials in general, good results or bad, this is probably an idealistic viewpoint relative to how people react. Then, the question becomes, where will the majority of the funding come from moving forward? If from outside institutions, agencies, corporations (as I would assume) then, as some above have suggested, if telling us anything jeopardizes the chances of publishing, forget about us. If the risk is not too much, and a lot of the funding will end up coming from Justadollarplease then perhaps it's beneficial to keep the community engaged with updated information. Sorry, but I'm an economist by trade and we always look at incentives!

  9. #1419
    I think the issue here is that Wise is trying to help us out by keeping us informed of the trial's progress, not for the purpose of soliciting funding as some suggest, but because he understands the position we're in, how it helps us get by each day knowing that we're a step (or push) closer. But some on this site, who are not from the medical profession (and obviously don't understand the protocols and procedures of scientific reporting), feel that it's their role to peer reveiw his work and question his integrity for the sake of self gratification, rather than ask geniune questions to improve our understanding, and this does nothing but waste his time (and our's as we have to plough through all of the rubbish lately to find the real info). I totaly understand where Wise is coming from regarding this. As a sceintist I would do the same if I was in a similar position with my work.

    Clayton
    Last edited by Geoman; 12-21-2012 at 05:15 AM. Reason: forgot to sign my name!
    "Wheelie Wanna Walk!"

  10. #1420
    Definitely agree with the above and would like to point out that I'm not suggesting that Wise is reporting or not reporting for funds; he's explicitly stated that he is not doing this and feels uneasy at the prospect. I was just pointing out that, regardless of how he feels, people in the community are likely to react by supporting a "front-runner". Although this isn't how science truly works, in the absence of understanding everything in these trials and in the subsequent papers people will likely feel that those with the "best" results are doing the "best" work. It's the publication bias and it's present in all fields....

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