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Thread: Talks with Rick Hansen Foundation

  1. #61
    Quote Originally Posted by Scaper1 View Post
    Lol, my sister is on the list too, and we've been joking that if she's picked to run, at some point she'll whip off the official shirt to reveal some sort of protest t-shirt. Maybe I'll join you with a sign.
    It sounds a good idea to me. Try to make sure TV reporters see it.
    In God we trust; all others bring data. - Edwards Deming

  2. #62
    Quote Originally Posted by Patrick Madsen View Post
    What do you mean by this Leif? Sounds like you are belittling the man for his achievement. Perhaps people from your own country should take up the banner and wheel in their own woods rather than a Canadian.
    Talking about a cure for SCI what progress he made happen?

    I see he is now talking mainly about an inclusive society (after he has been riding the cure horse for many years) taking attention away from the cure. That is damaging the cause not supporting the cure.
    He seems to be part of the problem now, not part of the solution.

    If I had access to the media like he has I would do a better use of it making sure the cure is seen as an urgent necessity, because like it or not

    "Paralysis kills .. it's just way slower" - J.S. -
    In God we trust; all others bring data. - Edwards Deming

  3. #63
    Quote Originally Posted by rjames View Post
    What drove me to make the "Black Hole" comment was seeing two people from RHI with Marc from MP (another vortex research org.) where money gets sucked in and nothing comes out. It's seems ironic that those two foundations align with each other. I guess it makes sense though, they both have the ability to take millions in donations on behalf of the SCI community but don't spend it in the way in which the SCI community would like to see it spent...

    Another question is why does everyone that is thinking about a clinical trial has to set up their own trial network? Seems like another redundancy and huge waste of money. Didn't the CRF spend millions setting up a trial network? has group used it? Don't we already have the US SCInet ? I think Geron went and set up there own network for their stem cell trial? and didn't CRF spend millions recently to set up a clinical trial network? has any group used it?
    All good points.
    We need to take the bull by the horns as you suggested a while ago.
    That more or less describes my current attitude with RHF.
    In God we trust; all others bring data. - Edwards Deming

  4. #64
    Quote Originally Posted by Patrick Madsen View Post

    Grammy posted here earlier about the ICORD going in with VAMC for clinical trials yet not one of you acknowledged that was a good thing.
    Why isn't ICORD running clinical trials already when we have several waiting and others being done somewhere else?

    Ask this to Rick since you can talk to him and let us know the answer please.
    In God we trust; all others bring data. - Edwards Deming

  5. #65
    Quote Originally Posted by GRAMMY View Post

    Building networks is the latest big money burner.

    I think so.
    In God we trust; all others bring data. - Edwards Deming

  6. #66
    Quote Originally Posted by Fly_Pelican_Fly View Post
    rjames, this has certainly become evident to me in the past 12 months.

    Every clinician(or principle investigator) and researcher has their own ideas about protocols to be used for a trial. There are so many variables it is almost easier to agree to disagree and work in your own silo. This tends to end up with the situation you have just described.

    When you see US Biotechs avoid these networks and go directly to individual centres in Czech Republic/Prague - then you have to ask why is this!?!
    Ok, then the question remains...why build huge networks in advance if the actual protocols are so unique and variable with each proposed therapy? Some even require very specialized equipment that is super expensive. Does it then become a matter of which hospital can afford the necessary special equipment and training? Hospital budgets? I don't understand, I'm just trying to grasp the various reasonings for the building of huge networks in advance if they require a different approach...I see why Geron had to train their own facilities...I also see why SCIUSA would need their own. Cell delivery and storage would be different along with the various scaffolds being used in the future also.
    Last edited by GRAMMY; 08-18-2011 at 02:13 PM.

  7. #67
    - Anyone know a good Canadian journalist from a big Canadian newspaper?
    I'm sure he/she(we) would get the info that he/she(we) asked for.
    Fast.
    "It's not the despair, I can handle the despair! It's the hope!" - John Cleese

    Don't ask what clinical trials can do for you, ask what you can do for clinical trials. (Ox)
    Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature.

  8. #68
    Quote Originally Posted by GRAMMY View Post
    Ok, then the question remains...why build huge networks in advance if the actual protocols are so unique and variable with each proposed therapy? Some even require very specialized equipment that is super expensive. Does it then become a matter of which hospital can afford the necessary special equipment and training? Hospital budgets? I don't understand, I'm just trying to grasp the various reasonings for the building of huge networks in advance if they require a different approach...I see why Geron had to train their own facilities...I also see why SCIUSA would need their own. Cell delivery and storage would be different along with the various scaffolds being used in the future also.
    I see the value of networks for acute trials as the window of opportunuity for treatment is so small and the number of cases is so low. For Geron and Novartis' acute trials it makes complete sense.

    But for chronic treatment, there is no reason why Phase I/II's cannot be done in individual centres (we are only talking about 20-60 participants) and that networks would organically form when Phase III and beyond is underway.

    Another issue is that there is very little agreement in the form of screening criteria and outcome measures for a chronic trial. Without agreement it is impossible to establish coherent networks.

  9. #69
    Ok, I understand your reasonings for both acute and chronic trials. That makes perfect sense. But that leads to me to yet another question. (sorry)

    So is the bottom line..without agreement it is impossible to establish coherent networks. Each new proposed trial for decades to come would ultimately need to establish their own network more than likely. (correct?)

    1. lack of agreement on screening criteria to enter the trial.
    2. lack of agreement on outcome measures for the research.
    3. specialized equipment for cell delivery, storage and rehabilitation equipment.

    It appears to me that for acutes each company will want to build their own network ahead of the trial they are undertaking for unquestioned success. For chronics, there really shouldn't be a need for a huge conglomeration of hospitals and clinics in a network until the therapy shows promise and they're running large patient numbers through it.

    What is the value of setting up these (generic) pre-made huge networks? Is that the biggest bang for our bucks?

  10. #70
    CRF was granted $7.9 million over the past 4 years to build a "network" for clinical trials with US Dept of Defense money. I think it went to the black hole. Geron used their own selected facilities. One of their recruiting sites (Maryland) happens to belong to the NACTN...but I don't think that site was selected because it was a CRF "NACTN" site though. NACTN did run a Phase 1 trial on Riluzole with 6 US hospitals and 1 Canadian, but then it went dead. Nothing more on the horizon.
    Where did you get the $7.9 figure from? If you look back historically, there have been collaborations going on for more than 20 years.

    Some centers join numerous collaborations ie. Maryland, Atlanta, TX because they are focused on neuro research and because the centers have the infrastructure in place.

    Look at Dr. Young's SCINet and see how many of his sites follow the NACTN model/sites.

    Riluzole did not die, to the best of my knowledge. It was a Phase i--results have to be interpreted and approval must be granted for Phase II. Additionally funding has to be in place.

    Given the whack that NIH and research are taking in the federal budget--do you really think the funding is instantaneous?
    Every day I wake up is a good one

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