Stuttering Drug Research and the Social Media

Social networking as a means for conducting drug testing was reported in the April 23, 2011 issue of the Wall Street Journal.

A clinical trial to test a drug for Amyotrophic Lateral Sclerosis (ALS) was conducted using social networking to enroll patients and collect data. The results were published in the online journal, Nature Biotechnology. This study, conducted by PatientsLikeMe, a health data sharing company, is an example of how social networking could play a role in the conduct of clinical trials and may be applicable to clinical trials for drugs affecting fluency.

Social network drug trials are not intended to replace conventional randomized double blind placebo controlled trials. However, such trials have become very time consuming and expensive and new drug testing models may be needed. Social network drug trials may have utility for the testing of off-label usage of various drugs that individuals might try to improve fluency but that may never arouse the (economic) interests of pharmaceutical companies. With the exception of pagoclone, which was never brought to market, the drugs tried for improving fluency (mainly atypical antipsychotics) have been previously used for other purposes.

The ALS study involved an online standardized collection of self-reported study participant data. The participants decided whether or not they would be taking the drug. PatientsLikeMe developed an algorithm to match study participants on the drug with at least one other participant not taking the drug in order to reduce the chance of false conclusions. The participants were able to see real-time data for groups and individuals on the website as the drug trial unfolded.

The social network approach took nine months to design, recruit, and present preliminary results, compared to about a year and a half for conventional trials.