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Thread: Q&A: Epidural Stimulation and Bladder, Bowel, & Sexual Function

  1. #41
    Quote Originally Posted by GRAMMY View Post
    Sorry Skeaman, I don't know anything about the patient facility scheduling. You'd have to call or email the Contact Information.
    I do read on here that trials is taking place . It's amazing that no one can contact the patients . Or the patients will not say how they are getting on !! . I know they are sworn not to say but you would think some one would Break rank
    AS I SIT HERE IN MY CHAIR . I LOOK OUT UPON THE GROUND .I WONDER WILL I EVER GET UP AND WALK A ROUND ??


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  2. #42
    Quote Originally Posted by skeaman View Post
    I do read on here that trials is taking place . It's amazing that no one can contact the patients . Or the patients will not say how they are getting on !! . I know they are sworn not to say but you would think some one would Break rank
    That would be a HIPAA violation here in the US.

    https://www.reference.com/government...qo=cdpArticles

  3. #43
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    I think to participate in the trail you have to register in their data base https://victoryoverparalysis.org/par...te-in-research

  4. #44
    Senior Member lunasicc42's Avatar
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    Quote Originally Posted by skeaman View Post
    I do read on here that trials is taking place . It's amazing that no one can contact the patients . Or the patients will not say how they are getting on !! . I know they are sworn not to say but you would think some one would Break rank

    Lol, I know, sometimes I wish somebody would just say "fuck it, this is too awesome to keep secret and do a 'tell all'". I realize that is selfish of me as that would potentially comprimise the whole trial but I can't help it
    "That's not smog! It's SMUG!! " - randy marsh, southpark

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  5. #45
    Quote Originally Posted by lunasicc42 View Post
    Lol, I know, sometimes I wish somebody would just say "fuck it, this is too awesome to keep secret and do a 'tell all'". I realize that is selfish of me as that would potentially comprimise the whole trial but I can't help it
    Except without the full data on 30 trial participants, you may get just the one lone "too awesome" story and then find out later that 29 others didn't experience much efficacy or had adverse events happen to them. I'm more inclined to be excited about a high percentage of the 30 total patients showing worthy efficacy so a therapy could be brought forward for the masses. That's where the rubber will meet the road.

    I also hope everyone realizes there are more lab teams contributing to the work on bladder and bowel for spinal cord injury, receiving NIH funding and publishing. A lot more...
    Last edited by GRAMMY; 12-31-2017 at 12:17 PM.

  6. #46
    Quote Originally Posted by GRAMMY View Post
    Except without the full data on 30 trial participants, you may get just the one lone "too awesome" story and then find out later that 29 others didn't experience much efficacy or had adverse events happen to them. I'm more inclined to be excited about a high percentage of the 30 total patients showing worthy efficacy so a therapy could be brought forward for the masses. That's where the rubber will meet the road.

    I also hope everyone realizes there are more lab teams contributing to the work on bladder and bowel for spinal cord injury, receiving NIH funding and publishing. A lot more...
    Granny
    my take on the trials is if there is trials going on . If the doctors do see any improvements with the patients they should say so and tell us what they know. Not wait four or five years to publish it For when you think of the masses of us waiting for something. When we think of all the sci that has commit suicide thinking that nothing is coming I don't like the Saying no news is good news we like to know what is happening and what is showing Great results . we all have one thing in common is spinal cord injury . sorry for giving of but that's what I think . I would say I am not alone in this thinking. When I got my injury the doctor told me to get a hobby and try to stay fit . For there is nothing for spinal cord injury yet. I told her it is coming in five years. That was 12 years ago I know there is sci on here that injuries is a lot older then my injury . So any bit of news that is positive should be leaked out
    AS I SIT HERE IN MY CHAIR . I LOOK OUT UPON THE GROUND .I WONDER WILL I EVER GET UP AND WALK A ROUND ??


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  7. #47
    Quote Originally Posted by skeaman View Post
    Grammy
    my take on the trials is if there is trials going on . If the doctors do see any improvements with the patients they should say so and tell us what they know. Not wait four or five years to publish it
    Fortunately, that's not how any of this works. Once the data has been gathered and analyzed, they'll put the paper together for publishing as soon as they can. They don't have control over exactly when it gets published. That is up to the journal but it's not four to five years to get the work published. It's not the goal of any journal to publish old news. If successful, this trial and it's publication should hit the news feeds pretty darn fast. In addition, scientists that don't get published generally aren't in the lineup for funding and keeping their labs either.
    Last edited by GRAMMY; 01-01-2018 at 06:17 PM.

  8. #48
    Senior Member lynnifer's Avatar
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    Fortunately? lol. You forgot the ‘un.’ 33yrs gone and entering my 34th this year.
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    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  9. #49
    It is frustrating that any news good or bad can't be announced as it happens. For me living with this decrepit injury, every day matters. I do understand the peer review journal process, but it slows down the progression of research having to wait several months to get feedback and possibly have to rewrite a publication just to be published, which is the scientific standard. It would be nice if there were a better method of progressing research more rapidly. The other major thing that delays research is the grant process, where it takes six or more months to get turnaround for funding on good ideas that should be investigated right away. This whole process probably delays every research project by a year or year and a half just for administrative procedures.

  10. #50
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    Quote Originally Posted by Skipow View Post
    It is frustrating that any news good or bad can't be announced as it happens. For me living with this decrepit injury, every day matters. I do understand the peer review journal process, but it slows down the progression of research having to wait several months to get feedback and possibly have to rewrite a publication just to be published, which is the scientific standard. It would be nice if there were a better method of progressing research more rapidly. The other major thing that delays research is the grant process, where it takes six or more months to get turnaround for funding on good ideas that should be investigated right away. This whole process probably delays every research project by a year or year and a half just for administrative procedures.
    You're absolutely right. The "publish or perish" mantra of the university-based research industry is terribly inefficient and researchers are necessarily focussed on constantly filling the contract pipeline. So the early, phase I stuff seems to always get "promising" results so that they can apply for Phase II funding (much larger $$) but halfway through the phase II they're writing proposals for new ideas because they lose their jobs if the research bucks stop flowing in.
    T3 complete since Sept 2015.

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