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Thread: Leading experts in basic science and clinical care discuss barriers to a "cure" for s

  1. #1

    Leading experts in basic science and clinical care discuss barriers to a "cure" for s

    Leading experts in basic science and clinical care discuss barriers to a "cure" for spinal cord injury.



    Saturday, 07 November 2009 18:08
    From Bench to Bedside:
    Leading experts in basic science and clinical care discuss barriers to a "cure" for spinal cord injury.
    By Amanda Crowe, MA, mPH


    It’s an exciting time for neuroscience, including the hope for new therapies to treat spinal cord injury (SCI). While basic scientists and clinicians are making important advances, they face daunting challenges when it comes to moving promising research from the bench to the bedside.

    To identify and address these barriers, leading experts in neuroscience and stem cells recently came together for the one-day workshop at the University of Georgia.


    “The concept of this workshop grew out of a need for better communication between stem cells scientists, who dared to use the term ‘cure’ for spinal cord injury, and care providers, who are worried about raising ‘false hopes’ and setting unrealistic goals for people with spinal cord injury,” says Ann Kiessling, Ph.D.,

    associate professor of surgery at Harvard Medical School and director of the Bedford Stem Cell Research Foundation, which organized the second annual gathering in cooperation with Shepherd Center. “Both groups clearly have the patient’s best interest at heart, but were not hearing each other’s concerns.”


    more...

    http://spinalcordworkshop.org/spinal-blog

  2. #2
    Senior Member lunasicc42's Avatar
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    dr. Young, were you a part of this meeting by any chance?
    "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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  3. #3
    Quote Originally Posted by lunasicc42 View Post
    dr. Young, were you a part of this meeting by any chance?
    Yes, I was. They took videos of the whole workshop. I can't find it but I think that somebody people told me that a video of my lecture there has been posted. The meeting occurred about 6 months ago.

    Wise.

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    Senior Member Duran's Avatar
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    This post has been removed by the author.
    Last edited by Duran; 12-02-2009 at 04:17 PM.
    2016

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    Senior Member DA's Avatar
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    who dared to use the term ‘cure’ for spinal cord injury, and care providers, who are worried about raising ‘false hopes’ and setting unrealistic goals for people with spinal cord injury.
    you would never hear words like this used with cancer, aids, or anything except sci. it's like she think the sci community is a bunch of low iq brain injuried morons. she needs a bat upside her head.

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    Senior Member lunasicc42's Avatar
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    thanks duran
    "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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    Thumbs down

    Quote Originally Posted by DA View Post
    you would never hear words like this used with cancer, aids, or anything except sci. it's like she think the sci community is a bunch of low iq brain injuried morons. she needs a bat upside her head.
    DA, don't bash our paralyzed friends with TBI. Research to help them will develop methods to help SCI too. Don't divide our community!

  8. #8
    Quote Originally Posted by DA View Post
    you would never hear words like this used with cancer, aids, or anything except sci. it's like she think the sci community is a bunch of low iq brain injuried morons. she needs a bat upside her head.
    I wish that people that talk about false hope would give good examples of what the effects of false hope are. I don't think that false hope is a real big problem. Sometimes false hope can be what keeps you going.
    Not having hope it is a much more important problem.

    Probably in 1962 the idea of going to the moon was considered false hope from many people and scientists

  9. #9
    Quote Originally Posted by paolocipolla View Post
    I wish that people that talk about false hope would give good examples of what the effects of false hope are. I don't think that false hope is a real big problem. Sometimes false hope can be what keeps you going.
    Not having hope it is a much more important problem.

    Probably in 1962 the idea of going to the moon was considered false hope from many people and scientists
    Paolo,

    The discussion was frustrating because few of the people in the audience had ever taken any therapy from animal experiments to clinical trial. Most have never done a spinal cord injury clinical trial. The criticisms expressed by some people that the clinical outcome measures had not been validated, for example, were wrong. Every one of the outcome measures have been tested and validated by multiple groups, published in many articles. Of course, they can be improved but ASIA motor and sensory scores are quite sensitive and reliable. Likewise, there is a good function score (SCIM) and a widely accepted walking score (WISCI).

    During the discussion, Dr. Ann Kiessling encouraged people to suggest why so few therapies have gone to clinical trial. Not surprisingly, you heard every excuse from lack of funding and lack of outcome measures to lack of of therapies, inadequate translational research and absence of clinical trial infrastructure. All of these of course contributed to the lack of progress over the past 8 year although, as I pointed out, other diseases such as multiple sclerosis were able to get therapies into clinical trials even though animal models of MS were not as good and multiple sclerosis is a very difficult disease to assess clinically.

    We do need more funding for basic, translational, and clinical research. We need better outcome measures. We need more large animal experiments. We need clinical trial networks. Of course, it would help if we have really good therapies that have been vetted in many good animal models. Finally, we need more and better scientists working on the problem. Regenerating the spinal cord is not a simple or easy problem. The field doesn't have enough good scientists, resources, or money.

    However, this does not mean that we should hold off on clinical trials. There are promising therapies that we need get into clinical trials. Unfortunately, we lack clinical trials infrastructure to test the most promising therapies efficiently and rigorously. We need to test combinations of the therapies. Above all, we need clinicians committed to doing clinical trials. As you know, a lot of time is taken up convincing clinicians to do clinical trials and then to raise the money for the trial.

    But, perhaps the most telling reason of all was pointed out by Irv Naylor (the man in the wheelchair who sponsored the meeting). Irv pointed out that there was a fear of failure. This was a particularly telling point he made it shortly after several people had brought up the consequences of failure of the Geron trial. The fear of false hope, for example, is a form of fear of failure. Scientistis and clinicians are afraid that the therapy will not work. However, until they try, they won't know.

    I agree with Irv Naylor. Fear of failure has been a major deterrent to clinical trials in the United States. Until we try, we won't know what problems we face. More important, it is not a failure when a trial shows that a treatment does not work, especially if the therapy is already being used without evidence for efficacy. If a well-designed trial shows that the therapy does not work, we should be going forward to the next promising therapy.

    Wise.
    Last edited by Wise Young; 11-29-2009 at 01:21 AM.

  10. #10
    We do need more funding for basic, translational, and clinical research. We need better outcome measures. We need more large animal experiments. We need clinical trial networks. Of course, it would help if we have really good therapies that have been vetted in many good animal models. Finally, we need more and better scientists working on the problem. Regenerating the spinal cord is not a simple or easy problem. The field doesn't have enough good scientists, resources, or money.
    However, this does not mean that we should hold off on clinical trials. There are promising therapies that we need get into clinical trials. Unfortunately, we lack clinical trials infrastructure to test the most promising therapies efficiently and rigorously. We need to test combinations of the therapies. Above all, we need clinicians committed to doing clinical trials. As you know, a lot of time is taken up convincing clinicians to do clinical trials and then to raise the money for the trial. Dr. Wise- I think you've said it best! I couldn't agree with you anymore on this subject!

    But, perhaps the most telling reason of all was pointed out by Irv Naylor (the man in the wheelchair who sponsored the meeting). Irv pointed out that there was a fear of failure. This was a particularly telling point he made it shortly after several people had brought up the consequences of failure of the Geron trial. The fear of false hope, for example, is a form of fear of failure. Scientistis and clinicians are afraid that the therapy will not work. However, until they try, they won't know.

    I agree with Irv Naylor. Fear of failure has been a major deterrent to clinical trials in the United States. Until we try, we won't know what problems we face. More important, it is not a failure when a trial shows that a treatment does not work, especially if the therapy is already being used without evidence for efficacy. If a well-designed trial shows that the therapy does not work, we should be going forward to the next promising therapy.

    Wise.[/QUOTE]

    k
    Donnie: Dr. Xiao, What are your thoughts on a cure/combination therapy for SCI's??
    CG Xiao: Donnie, I don't want to disappoint you, but I think it is impossible to restore the continuity of the cord or "bridge the gap" in the near future, let's say: 50 years. Dr Wise Young has been my most respected scientist in SCI. He has dedicated and contributed to SCI no other can match.

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