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Thread: ChinaSCINet Update

  1. #881
    Senior Member muskie's Avatar
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    whoa! really, listen you don't have to agree with paolo but I think you have crossed a line
    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

  2. #882
    I dont know what was said but was told it wasn't pleasant. Please do not attack other members. We are all on the same team here.

  3. #883
    Quote Originally Posted by paolocipolla View Post
    About clinical trial nets as I have said before I think they are not necessary at this stage to test terapies for chronic SCI. People with chronic SCI can easily travel, so one well equipped clinical trial center is all we need to test a therapy without wasting time & money to get to a consensum clinicians... big expencive meetings etc..

    Paolo
    Can you explain your logic behind this? I am not being argumentative, quite the opposite I travel quite a bit (Delta Diamond) and because of that pretty much figure I would not be able to participate in any clinical trial. Wouldn't the surgery to implant the stem cells require at least a month of hospital/recovery? Isn't there are pretty rigorous physical therapy regime following the implantation as well?

    Thanks,
    Tom

  4. #884
    Lets play the game....let's dream
    X prize would be 1 Billion dollars.
    If 1% of the richest people bounded to wheelchair due to chronic SCI know they would be healed if they pay $ 50,000 there will be 20,000 people able to collect 50 K's. In 3 months. And that's a Billion.
    Price will drop for others with more people saying "I will invest in my healing"
    (something like www.kickstart.com)
    With only 10% of that X prize we would be able to build fantastic facility lets say on Cuba where is available huge network of very inexpensive medical personals (excellent doctors and physio therapists).
    All major players (doctors) in the SCI healing game would be welcomed to work together and share researches with less restrictions with a ultimate prize in sight.
    Red Bull can put their Logo on my forehead if they inject initial capital.
    (actually, let's make auction for sponsorship calling Red Bull, Nike, Adidas, Google, Apple )
    So, money exist, promising therapies exist, wounded people with their families exist ... Honest doctor's who want to dedicate their research to human healing exists...One just need to facilitate and connect right threads.

    wAke up and fill your numb body...

    Reality will be probably very close to Dr.Wise plan except there
    is moment of good surprise that will by the end of 2013 put much stronger spotlight on people in America walking again and much more people talking and screaming here asking to get into cure boat.

    Crossing my fingers and pray for Dr. Wise and his therapy from the bottom of my heart.




    Quote Originally Posted by paolocipolla View Post
    Comad,

    I think your provocation in my regards it is good and usefull. We are in a war to get out of w/c here and kindnes & good manners don't fit well in this hell IMO.

    How to proceed?
    I wish I had a clear answer. I feel no researchers alone will get us a cure. Some researchers are actually taking advantage of our support, but don't have much to bring on the table when it comes to a cure for chronic SCI.
    Some are doing their best, but their work is just a part of the solution.
    Some have a mind set on stuff like E-Stim that at the end of the day will leave us paralized..
    Some just don't give a damn about us, they just see us/our orgs as a souce of $.

    As I said before, IMO a possible way out of this shit is to set up an SCI CURE X-Prize to get a good mix of competition & collaboration & set the mind of researchers toward the cure we really need.

    I hope an X-Prize will be set up soon.

    In any case we must keep a critical attitude to make sure we detect the BS that is being sold to us ASAP so we don't waste our money and energy in a wrong direction.

    About clinical trial nets as I have said before I think they are not necessary at this stage to test terapies for chronic SCI. People with chronic SCI can easily travel, so one well equipped clinical trial center is all we need to test a therapy without wasting time & money to get to a consensum clinicians... big expencive meetings etc..

    So far Wise has failed to convince me about the need of a clinical trial net, I think he is just still in love with the old NASCIS (being provocative here ) and the facts so far seem to say I am right here.

    Paolo
    www.MiracleofWalk.com

    Miracles are not contrary to nature, but only contrary
    to what we know about nature
    Saint Augustine

  5. #885
    There is a saying "you can't make a baby in a month by getting nine girls pregnant". No matter how much money you throw at the problem it will take time to solve. Could more money make it faster? Sure. No matter how much money you throw at it, it will still be years.


    Quote Originally Posted by comad View Post
    Lets play the game....let's dream
    X prize would be 1 Billion dollars.
    If 1% of the richest people bounded to wheelchair due to chronic SCI know they would be healed if they pay $ 50,000 there will be 20,000 people able to collect 50 K's. In 3 months. And that's a Billion.
    Price will drop for others with more people saying "I will invest in my healing"
    (something like www.kickstart.com)
    With only 10% of that X prize we would be able to build fantastic facility lets say on Cuba where is available huge network of very inexpensive medical personals (excellent doctors and physio therapists).
    All major players (doctors) in the SCI healing game would be welcomed to work together and share researches with less restrictions with a ultimate prize in sight.
    Red Bull can put their Logo on my forehead if they inject initial capital.
    (actually, let's make auction for sponsorship calling Red Bull, Nike, Adidas, Google, Apple )
    So, money exist, promising therapies exist, wounded people with their families exist ... Honest doctor's who want to dedicate their research to human healing exists...One just need to facilitate and connect right threads.

    wAke up and fill your numb body...

    Reality will be probably very close to Dr.Wise plan except there
    is moment of good surprise that will by the end of 2013 put much stronger spotlight on people in America walking again and much more people talking and screaming here asking to get into cure boat.

    Crossing my fingers and pray for Dr. Wise and his therapy from the bottom of my heart.

  6. #886
    Senior Member
    Join Date
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    Location
    c4/c5 Incomplete - NYC
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    Opinions, we all have them. I think we have to accept the fact that at this point nobody knows for sure what will the future bring. We can guess .. we can speculate but who here has the knowledge to say what results will the trials bring. Even those that are the closest to them carefully pick their words. Who knows ... we might get lucky. Considering how unlucky we are to be in this situation it would be a breath of fresh air.
    I realize its unreasonable way of thinking cause one has nothing to do with the other but I think the best we can do is to stay positive. At the end of the day positive thinking makes it easier to go through life and when we stay positive that affects our close ones as well.
    Last edited by BSgimp; 06-21-2012 at 01:21 AM.

  7. #887
    Quote Originally Posted by t8burst View Post
    Can you explain your logic behind this? I am not being argumentative, quite the opposite I travel quite a bit (Delta Diamond) and because of that pretty much figure I would not be able to participate in any clinical trial. Wouldn't the surgery to implant the stem cells require at least a month of hospital/recovery? Isn't there are pretty rigorous physical therapy regime following the implantation as well?

    Thanks,
    Tom
    First I want to point out once again that if you do a trial on acute SCI patients can't travel long distances and sometimes the acute therapies need to be administred in few hours.
    For that reason it is convenient to have a multicenter trial to recrute the number of patients needed for the trial faster. Geron still took very long just to recrute 5 patients in a multicenter trial BTW.

    When you have to do a trial on chronic SCI the recruting can be more efficent as you just select partecipants for an existing population that can travel easily to a clinic that is running the trial where ever it is.

    Usually even for a stem cell transplant you stay in the hospital less than a week, then you move to a rehab center that can/should be in the same clinic, just think of a Spinal Unit.

    Now if you have to do a phase I/II trial you would need from 10 to 20 patients. Let's say you are testing a combination therapy you may need 40 patients, to ck all combinations are safe and which show better indication of efficacy.

    Then you move to phase III that may need 50 people per arm. (Keep in mind that with chronic SCI people you need less people as you have less variability)
    Let's say you have three arms in the trial, so that requires 150 patients.

    A neurosurgery team can do easily more than a patient a day.

    Now think about a phase I/II why do you need more than one center to do 10/20 patients?

    About phase III I think also a single center could be enough, but if you want you can team up with one or two centers to split the work (especially for the rehab).

    In a recent issue of Nature by Martin E. Schwab and Anita Buchli, they say:

    Instead of investing billions in one drug, let’s spread funding among smaller, proof-of-concept trials for compounds with good preclinical evidence. By focusing on well-selected populations (with tens of patients, not hundreds) and concentrating on a few centers..

    http://www.spinalcordinjury-paralysi...-neurosciences

    This is not exacly in line with what I think (as my focus is on chronic) but not far I would say.

    Hope it makes sense what I said.

    Paolo
    Last edited by paolocipolla; 06-21-2012 at 06:26 PM.
    In God we trust; all others bring data. - Edwards Deming

  8. #888
    Quote Originally Posted by comad View Post
    Lets play the game....let's dream
    X prize would be 1 Billion dollars.
    If 1% of the richest people bounded to wheelchair due to chronic SCI know they would be healed if they pay $ 50,000 there will be 20,000 people able to collect 50 K's. In 3 months. And that's a Billion.
    Price will drop for others with more people saying "I will invest in my healing"
    (something like www.kickstart.com)
    With only 10% of that X prize we would be able to build fantastic facility lets say on Cuba where is available huge network of very inexpensive medical personals (excellent doctors and physio therapists).
    All major players (doctors) in the SCI healing game would be welcomed to work together and share researches with less restrictions with a ultimate prize in sight.
    Red Bull can put their Logo on my forehead if they inject initial capital.
    (actually, let's make auction for sponsorship calling Red Bull, Nike, Adidas, Google, Apple )
    So, money exist, promising therapies exist, wounded people with their families exist ... Honest doctor's who want to dedicate their research to human healing exists...One just need to facilitate and connect right threads.

    wAke up and fill your numb body...

    Reality will be probably very close to Dr.Wise plan except there
    is moment of good surprise that will by the end of 2013 put much stronger spotlight on people in America walking again and much more people talking and screaming here asking to get into cure boat.

    Crossing my fingers and pray for Dr. Wise and his therapy from the bottom of my heart.
    I think the money will come if the X-Prize competition will be design and runned well.
    To put up a prize alone it is not enough IMO to solve such a complex problem.
    We need to attract researchers and investors by offering a productive environment i.e. to coordinate & facilitate the work of the teams that take the challenge.
    That should produce a leverage effect that should drive money in the field so research teams can take advantage of that if they focus on curing SCI.

    I think it is not easy, but also not impossible to set up a prize & run it efficently.

    Paolo
    In God we trust; all others bring data. - Edwards Deming

  9. #889
    Quote Originally Posted by keeping on View Post
    ...
    ...I repeat that I'm confounded as to why funds are not flowing in.
    ...
    I wonder that too

    Paolo
    In God we trust; all others bring data. - Edwards Deming

  10. #890
    Quote Originally Posted by Wise Young View Post
    If there were no anisotropy at the injury site before treatment, i.e. a gap, and then significant bundles of anisotropic white matter appears after the treatment, going long distances across the injury site and beyond, that would be a pretty strong argument for regeneration, don't you think?

    Wise.
    Sure it is a strong argument for remyelination, maybe less strong for axon regeneration.
    Unfortunatly, that I know, there is no technology available that can show an axon invivo in humans yet, so at best you have just strong arguments.

    As I said before, I am very curious to see the DTI's as the study will be publisched.

    Paolo
    In God we trust; all others bring data. - Edwards Deming

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