An automated communication system in a Contact Registry for persons with rare diseases: tools for retaining potential clinical research participants

Abstract

Strategies to enhance recruitment are useful in clinical research network settings. Our network data center maintains a Contact Registry of patients who express a willingness to be contacted to enroll in clinical studies. An automated system generates periodic and customized communications to notify registrants of potential studies and network events. The majority of these communications are sent by email, although the system also supports postal communications. A database tracks the sending of all communications and facilitates reports of registry activity.