Social media has been a boon for many patients with rare disorders, enabling them to share their experiences with people who truly understand what they're going through.
It's not without its down sides, though. Misinformation can be passed around, sensitive subjects can be distressing, and the negative news can feel overwhelming sometimes.
Those things are true of any social activity, whether in person or in the virtual world, but now there's a risk that is particularly associated with the virtual world: the possibility that patients in clinical trials will undermine the trials by sharing their experiences with other patients.
The concern is that patients will "unblind" the study (figure out which patients are on placebo and which are not). Once the study is unblinded, according to a Wall Street Journal article, "Drug makers and researchers ... worry that patients may drop out if they suspect they aren't getting the drug being tested, or may report symptoms inaccurately because of the influence or suggestions of others in the trial."
While there may not be contractual or regulatory provisions against publicly sharing detailed information about clinical trial participation, it's important to keep in mind the risks of tainting the data. The last thing anyone wants is for the equivalent of a "mistrial" to be called and the research suspended or discarded, because the study was unblinded or otherwise affected by outside factors, and therefore the reported outcomes and adverse effects can't be relied upon.
You can read more of the Wall Street Journal article here: