• Suggestions for clinical trials

    Posted by Monix on November 18, 2019 at 11:35 am

    Hi, I don’t know if it’s the right forum, but I would like to discuss some issues that concern me a lot about the inclusion and exclusion criteria of clinical trials.
    Sorry for my English, I use google translate.
    Currently clinical trials have very strict parameters for the recruitment of patients. Some pharmacists limit access to the trial by the age of the patients. I think it is very important not to limit with a specific age, but with functional tests that show if the patient is in the best conditions to be able to opt for the clinical trial.
    Another issue that worries me a lot is the lack of clinical trials for patients older than 12 years that still maintain ambulation, as well as clinical trials for non-ambulation patients.
    I strongly believe that pharmacists should also opt for this type of clinical trials for older patients, who are honestly the ones with the farthest possible treatment or a possible cure for their disease.
    I would like this forum to talk about the experience of participating in clinical trials and if they have any suggestions to make.
    Thank you!

    Becky replied 4 years, 5 months ago 4 Members · 3 Replies
  • 3 Replies
  • Ralph Yaniz

    November 19, 2019 at 7:38 am

    Monica, You bring up some good points. Since I am on at least one patient advisory board with a biotech company I try to discuss these types of issues. I think it’s important in trials, where you are doing testing and assessment, to have some variety in the participants. I’m working with a coalition of LGMD groups as we advocate for these things. Thanks for your comments.

  • Danielle "Dani" Liptak

    November 20, 2019 at 4:23 pm

    Hi Monix, I understand your frustration. As an adult with FSHD, I worry that if there is a treatment someday that I will not be able to benefit from it due to my age or abilities. It does seem unfair that some patients are “valued” more than others when it comes to trying to find a cure. I want to think with time, and a lot of advocating people of all ages and abilities will be able to benefit from a treatment someday. Like with most things, it takes a lot of time. I appreciate your comments, and I encourage you to keep asking questions!

  • Becky

    November 21, 2019 at 12:50 pm

    I agree.  Does anyone know if there are any trials for LGMD type 2A.  I saw one for type 2D.  Why did they choose 2D?  It appears 2A is the most common type because more people have it.

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