Clinical Trials Results – you have the right to be informed

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Viewing 7 posts - 1 through 7 (of 7 total)
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  • January 29, 2014 at 8:13 pm #79108
    marions
    Moderator

    Great, Caroline.
    Hugs,
    Marion

    January 29, 2014 at 7:44 pm #79107
    bananaf1sh
    Spectator

    Ah, got it. Well, let’s see if I can get any useful information from the dr anyway.

    Thanks again!
    Caroline

    January 29, 2014 at 7:39 pm #79106
    marions
    Moderator

    Sorry for the misunderstanding, Caroline. Patients are entitled to receive “the end results” only. In other words, the study has to be completed. It is only then that the researchers are able to evaluate the data and release the information which (generally) is published.
    However; patients enrolled in these trials rarely read published material.
    Therefore, it is the obligation of the study coordinator to inform all participants enrolled in the study of the clinically, validated outcome of the clinical trial.
    Hope this helped.
    Hugs,
    Marion

    January 29, 2014 at 7:29 pm #79105
    bananaf1sh
    Spectator

    Thanks so much, Marion! I just emailed my mom’s ONC. I was about to post an update on her experience on Cabozantinib, but I’ll wait to hear back from the dr and include that information in my post.

    Big hugs back,
    Caroline

    January 29, 2014 at 7:01 pm #79104
    marions
    Moderator

    Caroline…absolutely. In fact, it applies to all clinical trials – past, present, and future.
    Hugs,
    Marion

    January 29, 2014 at 6:57 pm #79103
    bananaf1sh
    Spectator

    Marion,

    This such a helpful & timely reminder. Does it also apply for trials that are still ongoing?

    Caroline

    January 29, 2014 at 6:31 pm #9467
    marions
    Moderator

    Clinical trial participants must know that the research community has an obligation to communicate to you the results of the study.

    You may not find the wording on the consent form, but you should insist on having it added or request adding the language in your own words.

    Hugs,
    Marion

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