• Awareness and Advocacy

  Should ALS patients “follow the rules” or share clinical data?

  Posted by Dagmar on June 20, 2019 at 6:00 am

  

  This article brings up a very good point:

  • When so many patients are desperate for helpful treatments or a cure, shouldn’t they be able to share with others that something they’re using is working? Even if sharing means that clinical outcomes are affected?

  This may be another example of how established FDA clinical timelines are not meeting the needs of ALS patients – – who have no time to spare.

  I’m interested what our forum members think about this topic and article. Especially those who have (or are currently) participated in a clinical trial.

  “Social Media Can Threaten Medical Experiments”

  replied 4 years, 10 months ago 1 Member · 0 Replies

  • Advocacy
  • ALS clinical trials
  • Social Media
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