Providing patients with outcomes of clinical trials

Initiatives to informing patients after their participation in a clinical trial of the outcome

According to surveys conducted by the Boston-based Center for Information and Study on Clinical Research Participation (CISCRP) and published in 2012, over 90% of clinical trial participants never hear back—they receive no oral, written or digital communication—about the trials they contributed to (Exp. Rev. Clin. Pharmacol., 5, 149–156, 2012). Historically, and in the majority of cases even today, there are no promises made about making trial results available to participants. But a 2013 survey conducted by CISCRP of more than 5,600 volunteers found that the prospect of receiving results was one of the top five reasons for people to participate in trials at all. So even though there are no promises made by study investigators, participants do come in with an expectation of receiving results.

Now a growing number of researchers, disease foundations and advocacy organizations are working to improve patient access to data from clinical trials in which they participated.

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