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Thread: Funding our own trials

  1. #11
    Quote Originally Posted by maf View Post
    That is true, but it does not really apply to our case here. We are dealing with a good the market is not as interested in producing (uncertain returns for a high investment in a long horizon) and we have an player to take into account (very important both because it directs funds and sets rules, approvals for clinical trials, etc..).

    I do believe a centralized effort would be very benefitial for a cronic cure for SCI. The main problems are the ones pointed out by Future Walker: who is in charged, how to supervise, how to clearly defined the actions that he (or they if we think on something like a board) can take...yes, human nature is too complicated.

    Still, the benefits would be substantial. It would not only be a form for chaneling existing funds into practical therapies and clinical trials for us, but for lobbying for public funds, getting the society involved, etc
    Watch as a centralized effort becomes bureaucratic and complacent, such as the Miami Project/ Chris Reeves Org. I agree that the free market alone will not pay for research in our area, for various and understandable reasons. That is why our governments need to be investing serious money in the labs that have the best ideas. Seeing as how they spend a lot taking care of us, it would make sense in the long run. The best way to get new ideas, increased efficiency is via competition. Nevertheless, this discussion is moot.

  2. #12
    We are yet to try the free market.

  3. #13
    Quote Originally Posted by NowhereMan View Post
    Watch as a centralized effort becomes bureaucratic and complacent, such as the Miami Project/ Chris Reeves Org. I agree that the free market alone will not pay for research in our area, for various and understandable reasons. That is why our governments need to be investing serious money in the labs that have the best ideas. Seeing as how they spend a lot taking care of us, it would make sense in the long run. The best way to get new ideas, increased efficiency is via competition. Nevertheless, this discussion is moot.
    True. But our government funding is very limited and we don't have have enough effective lobbyists.

  4. #14
    Quote Originally Posted by Chaz19 View Post
    Thank you for your thoughtful and comprehensive reply. I think I may have asked a confusing set of questions.

    As far fetched as it may be; is there any structural mechanisms in our clinical trial protocol/laws that would allow a patient to pay for part of a trial I.e rehab part of the ucmc/ lithium trial to reduce costs? Does this question make sense?
    Chaz, a recent change in the FDA regulations allows clinical trial subject to pay for portions of clinical trials that have known benefit, such as rehabilitation or surgery to remove rods. However, these must be approved by the FDA and the IRB (Institutional Review Board). The restriction on paying for experimental therapies, however, still apply. Wise.

  5. #15
    This is interesting. If project walk or a similar rehab organization could prove the beneficial effects of exercise (thought the FDA) then the costs of trials could be reduced.

    People are already raising funds and paying for intense rehab programs. It would be great to add in existing programs as components after standardization. Is this a real possibility to move trials forward?

  6. #16
    Senior Member Leo's Avatar
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    Quote Originally Posted by Chaz19 View Post
    This is interesting. If project walk or a similar rehab organization could prove the beneficial effects of exercise (thought the FDA) then the costs of trials could be reduced.

    People are already raising funds and paying for intense rehab programs. It would be great to add in existing programs as components after standardization. Is this a real possibility to move trials forward?
    My guess is this has already been proven effectivly to the FDA, right

    I mean how many FES and walking simulation therapies have been done.

    Thanks Wise, that news is really interesting.

    PW and other centers could be recruiting grounds, or if someone had an idea they would be in a trial they's sign on to one of these rehab centers.
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