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Dr. Young: could you please elaborate on this statement

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    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
    I suppose not?

    Comment


      #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.

      Comment


        #4
        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.

        Comment


          #5
          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.

          Comment


            #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.

            Comment


              #7
              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.

              Comment


                #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.

                Comment


                  #9
                  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; 31 May 2014, 9:01 AM.
                  In God we trust; all others bring data. - Edwards Deming

                  Comment


                    #10
                    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.

                    Comment


                      #11
                      Originally posted by khmorgan View Post
                      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.
                      I don't have an ulterior agenda. I'm questioning the wisdom of releasing vague information way in advance of when anything can or should be concretely said. Is there nothing valid about a concern like that? Did I ever say I expect a magic bullet? If you're not referring to me, sorry for quoting you...

                      Comment


                        #12
                        Originally posted by ay2012 View Post
                        I don't have an ulterior agenda. I'm questioning the wisdom of releasing vague information way in advance of when anything can or should be concretely said. Is there nothing valid about a concern like that? Did I ever say I expect a magic bullet? If you're not referring to me, sorry for quoting you...
                        Actually, I wasn't referring to you. However, I don't agree with you that only concrete results should be posted here. If that is a prerequisite for posting, then not much would have been posted here over the years. I would only suggest that all posts contain qualifying statements like "preliminary results."

                        Finally, I'm not a big fan of meaningless arguing which serves no purpose except offending people. So, if I offended you or anyone else by my statements, I apologize. I will end my participation here.

                        Comment


                          #13
                          Originally posted by ay2012 View Post
                          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.
                          It is true that it's always nice for us to know what recoveries might be possible with the very lasts trials, but to my point of view, the bad thing for the cure is that it seem to me that there's a lack of communication between scientists who are organizing trials..
                          Here in Spain, we have Dr. Vaquero who's organizing a clinical trial with bone marrow stromal cells, I guess everyone who's part of the spanish security social and aged from 18 yo to 60 yo can be involved.. As far as I know blood cord cells are much more effectivethan the bone marrow ones.. Why is Dr. Vaquero continuing in that direction ?.. Does he know about blood cord cells ?.. To my point of view something has to be done..

                          Comment


                            #14
                            Originally posted by George78 View Post
                            It is true that it's always nice for us to know what recoveries might be possible with the very lasts trials, but to my point of view, the bad thing for the cure is that it seem to me that there's a lack of communication between scientists who are organizing trials..
                            Here in Spain, we have Dr. Vaquero who's organizing a clinical trial with bone marrow stromal cells, I guess everyone who's part of the spanish security social and aged from 18 yo to 60 yo can be involved.. As far as I know blood cord cells are much more effectivethan the bone marrow ones.. Why is Dr. Vaquero continuing in that direction ?.. Does he know about blood cord cells ?.. To my point of view something has to be done..
                            I would like to see the data where there is evidence that cord blood cells are more effective than bone marrow cells. Do you have a link?

                            Comment


                              #15
                              Originally posted by c473s View Post
                              I would like to see the data where there is evidence that cord blood cells are more effective than bone marrow cells. Do you have a link?
                              ... sorry I can't provide any links, this is my idea coming from readings of news around..
                              I may be wrong, but as far as I know, Dr. Vaquero did not announced any fantastic results..
                              I guess Wise will tell us about that or may be others, I'm not a scientist..

                              Comment

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