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Thread: U.S. SCI Clinical trial

  1. #1
    Senior Member Leo's Avatar
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    U.S. SCI Clinical trial

    There are only two ways I can see this happening any time soon.


    1. Passage of the CRPA and that may get easier but still who knows. politics


    2. Some group, university, established Quest group, foundation etc. that has the organization and a knowledgable proactive group to take donations, handle the funds, decide which therapy to go with. yada yada

    This group must setup a fund specifically and only for clinical trials.

    Don't know about you but it seems foolish to keep funding research when we can't test the current research that has been ready for trials.


    I can't help but think that one succesful clinical trial would open the doors to funding for more trials.


    Sue asked this question in another thread,

    What would it take to do a small, say 10 treated/10 placebo chronics in the US?

    Wise you answered for MS study. Are those cost numbers the same for SCI?
    http://justadollarplease.org/

    2010 SCINet Clinical Trial Support Squad Member

    "You kids and your cures, why back when I was injured they gave us a wheelchair and that's the way it was and we liked it!" Grumpy Old Man

    .."i used to be able to goof around so much because i knew Superman had my back. now all i've got is his example -- and that's gonna have to be enough."

  2. #2
    Amen, Leo. I concur 100%

    Sue

    (PS to readers--it was Sue Pendelton who asked the question in another thread.)

  3. #3
    Leo, there is a third way: state funding. A number of states are beginning to fund stem cell research. The funds for stem cell research could be used to support clinical trials if they involve stem cells. States like California and New Jersey, for example, can initiate clinical trials of umbilical cord blood stem cell transplants. Likewise, Connecticutt passed a bill for $10 million per year for stem cell research. New York is contemplating a billion dollar bond. Maryland is close to passing a $28 million/year bond based on cigarette taxes. Even Pennsylvania is thinking of such funding. Likewise, there may be stem cell research funding in Wisconsin, Illinois, and other states. Finally, there is the quest state funds. In New York state, they have $8 million per year, New Jersey has $3.4 million per year, and some 20 other states have varying amounts for spinal cord injury research. Once the template for a trial has been set in ChinaSCINet, I think that it may not be so difficult to bring that template back to the U.S. for state-funded regional clinical trials.

    Regarding costs, you need to do the arithmetic. I gave the cost per patient but the total cost depends on the number of patients. Incidentally, patients should not be allowed to pay for the therapies in clinical trials.

    Wise.

  4. #4
    Senior Member Schmeky's Avatar
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    Quote Originally Posted by Wise Young
    Regarding costs, you need to do the arithmetic. I gave the cost per patient but the total cost depends on the number of patients. Incidentally, patients should not be allowed to pay for the therapies in clinical trials.

    Wise.
    Why not?

    Why couldn't those that were willing and able, be allowed to partially fund a clinical trial? It could be called a donation, or an endowment, or a contributon.

    The money has to come from some where and it seems with the Iraq war coupled with the recent natural disasters, the CRPA bill will be in limbo for another 3+ or more years.

  5. #5
    Quote Originally Posted by Schmeky
    Why not?

    Why couldn't those that were willing and able, be allowed to partially fund a clinical trial? It could be called a donation, or an endowment, or a contributon.

    The money has to come from some where and it seems with the Iraq war coupled with the recent natural disasters, the CRPA bill will be in limbo for another 3+ or more years.
    How would that sit if some paid and some didn't-Think about the added pressure on the person responsible for insuring a good statistical base unopen to bias. How about you, or anyone else donate to the trial anonymously?
    Last edited by bigbob; 12-30-2005 at 08:44 PM.
    Don't ignore the Reeve Legacy, Remember he and Dana supported open research and fought hard for ESCR

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  6. #6
    Leo - agreed. I've thought about this alot. Bottom line - money talks.

    The organization / group that can bankroll (a) the trial with all of the added liabilities, etc. gets to call the shots.

    Or they could fund those already showing promise and push the process ahead faster.

    Ultimately as I've said a hundred times here, bottom line = money/funding. Without it we plod along very slowly. With it we put trial infrastructure together in six months.

    Science and the Cure are not altruistic. We must see it and approach it as a business decision with all of the white noise of politics, morality, monetary incentive and potential litigation as part of the equation and our determination equally as strong.

    Onward and upward.

  7. #7
    Have you every heard the phrase "Money talks and nobody walks"

    I am not with you on those with the money gets to call the shots

    Although it might be true, it may not be the best way to a successful treatment.
    Don't ignore the Reeve Legacy, Remember he and Dana supported open research and fought hard for ESCR

    StemCellBattles

    Support H.R. 810

  8. #8
    Quote Originally Posted by bigbob
    I am not with you on those with the money gets to call the shots

    Although it might be true, it may not be the best way to a successful treatment.
    what would you suggest is a better "way to a successful treatment?"

  9. #9
    Quote Originally Posted by Scott Pruett
    what would you suggest is a better "way to a successful treatment?"
    Going about it as a business may in fact not take into consideration many aspects, the main one is how the lives of people with sci are affected.

    To often we have tried to appeal to the business aspect only to be pushed aside by a more profitable endeavor.

    As I have said many times a message to appeal on the basis of how unethical it would be to not work diligently on a cure for paralysis, might prove to be key. At that point funds would be dedicated funds. Not haphazard or for ulterior interests.
    Don't ignore the Reeve Legacy, Remember he and Dana supported open research and fought hard for ESCR

    StemCellBattles

    Support H.R. 810

  10. #10
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    I agree with much of what you say here BigBob - like it is today, it's like we don't exist!

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