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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
    Amen, Leo. I concur 100%

    Sue

    (PS to readers--it was Sue Pendelton who asked the question in another thread.)
    Please submit your photo and story of hope:

    http://bridges2hope.unite2fightparalysis.org/


    http://unite2fightparalysis.org/

    Comment


    • #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.

      Comment


      • #4
        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.

        Comment


        • #5
          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, 08:44 PM.

          Comment


          • #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.

            Comment


            • #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.

              Comment


              • #8
                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?"

                Comment


                • #9
                  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.

                  Comment


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

                    Comment


                    • #11
                      Originally posted by bigbob
                      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.
                      I see what you're saying, and I somewhat agree, but I think a solution would be to simply restructure the business model to involve the consumers. Yes, I know this is all hypothetical.

                      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.
                      Actions speak louder than words. Where would the funds come from anyway?

                      Comment


                      • #12
                        Wise i was including the third way, cuz this is only going to happen on the state level. I'll keep pushing the CRPA till whenever but we gotta push this plan A or whatever it's called.

                        South Dakota is a Quest 4 Cure baby state, dealing with peanuts compared to the others.

                        I almost hate funding a project when I know there's already so much on the shelf. If I could get my way we'd stop and just sit on our funds, draw interest and make one decision. Which trial to fund. game over but this won't happen, well shit never say never

                        I would like to see Sue in Maryland or Patricia in NJ or anyone like them setup a clinical network account.

                        we need to start building that fund now not waiting for the template, yes we will need it and it will speed things up.......but gotta have the money

                        i would much more enjoy raising funds for that network

                        look where we are now, folks like Hans K, John McD. and a few others beating the bushes for funds to do a trial, not cool

                        we need a pool of funds and a board where these folks can apply for funds from it.

                        Wise lets say 25 acute and 25 chronics, give us a on the high side ballpark figure
                        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."

                        Comment


                        • #13
                          I would sincerely hope that most members as well as the public at large understands motivation by guilt versus economic incentive.

                          Motivation by guilt, which some have suggested here, doesn't work in the world of reality.

                          Comment


                          • #14
                            Originally posted by Chris Chappell
                            I would sincerely hope that most members as well as the public at large understands motivation by guilt versus economic incentive.

                            Motivation by guilt, which some have suggested here, doesn't work in the world of reality.
                            I never knew that people only help other people out of guilt.

                            Comment


                            • #15
                              Leo, yes, South Dakota is one of the original Quest states. The number of patients required to demonstrate a significant improvement depends on the variability of neurological function. But, assuming 25+25 and $50,000 per patient, that is about $2.5 million. If it is $100,000 per patient, it would be $5 million.

                              Wise.

                              Originally posted by Leo
                              Wise i was including the third way, cuz this is only going to happen on the state level. I'll keep pushing the CRPA till whenever but we gotta push this plan A or whatever it's called.

                              South Dakota is a Quest 4 Cure baby state, dealing with peanuts compared to the others.

                              I almost hate funding a project when I know there's already so much on the shelf. If I could get my way we'd stop and just sit on our funds, draw interest and make one decision. Which trial to fund. game over but this won't happen, well shit never say never

                              I would like to see Sue in Maryland or Patricia in NJ or anyone like them setup a clinical network account.

                              we need to start building that fund now not waiting for the template, yes we will need it and it will speed things up.......but gotta have the money

                              i would much more enjoy raising funds for that network

                              look where we are now, folks like Hans K, John McD. and a few others beating the bushes for funds to do a trial, not cool

                              we need a pool of funds and a board where these folks can apply for funds from it.

                              Wise lets say 25 acute and 25 chronics, give us a on the high side ballpark figure

                              Comment

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