Transparency as a Means to Increase Clinical Trial Enrollment

In this age of mandated clinical trial registries and results databases, pharmaceutical, biotechnology, and medical device companies struggle to disseminate information about protocol and trial results in ways that patients can easily understand. Patient advocacy groups are seldom consulted when clinical trial protocols are developed or when trial results are released, yet these groups represent tens of thousands of patients with diseases and disorders. In fact, patient advocacy groups were key drivers in the passage of the Food and Drug Administration Amendments Act (Section 113), which fostered in the era of transparency. This article highlights how advocacy organizations function as a direct conduit to specialized patient populations and how these groups can provide a communication channel to reach thousands of potential clinical trial participants.