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Thread: Looking for trials? What would you want to know?

  1. #1

    Looking for trials? What would you want to know?

    A new platform is being built by a consortium of the larger SCI foundations and organisations to help people find trials.

    The aim is to make it as easy to use and useful as possible to the community, rather than the minefield that is clinicaltrials.gov.
    Trials will be professionally reviewed so that the information is clear and relevant.

    The question is what would you want to know to make you join a trial?

    I've put a list of the things that are on there, but if you have ideas of things that are missing or even if its just to let us know whats most important to you it will help make a system thats relevant to everyone.


    • What does this trial aim to do?
    • Does it apply to me? - Injury levels, ASIA type etc
    • Where is it and how do I sign up
    • Whats involved in the trial
    • Email notifications of updates and new trials


    Any feedback or ideas are fair game and will be added to the roadmap for it.

    thanks,

    niall

  2. #2
    I like your list.
    How intensive time wise it is. As in will I have to move somewhere to partake in the trial.

    I like this idea. I tried signing up for notifications for trials and I?d get notified for trials that would aim to improve bone density through use of a standing frame or testing whether playing a game on a phone made you more accepting of your injury (better at self care). Trials like that are a waste of time imo.

  3. #3
    Thanks, thats good feedback. I'll make sure the time element is included.
    The only trials that will be professionally reviewed are interventions. The others will be in the system for people who want to see, but you can choose to exclude seeing them.

  4. #4
    In addition to the time intensity, there is also the question of whether or not people will have travel costs reimbursed (Gas, car mileage, flights and hotels if necessary) which many people like to know up front.

  5. #5
    Thanks, I'll make sure that one is in there.

    ---
    Edited

    Just been told that trials aren't allowed to publicise this info because it might be seen as an inducement and they aren't allowed to do that by law.
    However the local ethics board for the trial can allow reimbursement. Its just that you would have to apply to find out if it was available.
    Last edited by niallel; 05-24-2018 at 11:45 AM.

  6. #6
    This should also include the information that is recommended in this publication which is posted on the ICORD website:

    http://icord.org/research/iccp-clini...s-information/

    (KLD)
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

  7. #7
    Quote Originally Posted by niallel View Post
    Thanks, I'll make sure that one is in there.

    ---
    Edited

    Just been told that trials aren't allowed to publicise this info because it might be seen as an inducement and they aren't allowed to do that by law.
    However the local ethics board for the trial can allow reimbursement. Its just that you would have to apply to find out if it was available.
    That makes sense - might want to have a "basic information" page or something like that on this new database so that people know they have to inquire to a trial first before they get some information like that!

  8. #8
    Quote Originally Posted by SCI-Nurse View Post
    This should also include the information that is recommended in this publication which is posted on the ICORD website:

    http://icord.org/research/iccp-clini...s-information/

    (KLD)
    Thanks, thats a great link. A number of the organisations in this wrote that - although its from a long time ago so suppose thats why they didn't mention it.

  9. #9
    Fully functioning muscle groups should also be stated such as biceps, triceps, trunk control, hand and finger control/strength, etc for each trial.

    List any restrictions based on previous experimentation such as stem cells, electrode implants, magnetic therapy, etc.

    Of working muscle groups, think it would be important for the clinicians to understand how physically fit is the person and what form of routine exercise is conducted and how frequently.

    The extent of muscle atrophy for the non-working muscle groups (skin & bones vs existing muscles but just not firing).

  10. #10
    Quote Originally Posted by 6 Shooter View Post
    Fully functioning muscle groups should also be stated such as biceps, triceps, trunk control, hand and finger control/strength, etc for each trial.

    List any restrictions based on previous experimentation such as stem cells, electrode implants, magnetic therapy, etc.

    Of working muscle groups, think it would be important for the clinicians to understand how physically fit is the person and what form of routine exercise is conducted and how frequently.

    The extent of muscle atrophy for the non-working muscle groups (skin & bones vs existing muscles but just not firing).
    Thanks for that. All the restrictions will be listed from clinicaltrials.gov entry. The other stuff is a good idea for the online application piece.

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