Background The identification and enlistment of suitable participants into clinical studies is often challenging, requiring a large commitment of time and staff resources. The recruitment and retention of populations typically underrepresented in research present additional challenges to enrollment of sufficient numbers of participants in clinical studies. Inadequate participation may undermine the pace and direction of new treatment discoveries.
Purpose Registries of potential research participants are powerful tools to support research by providing a framework to streamline screening and recruitment and to maintain a communication history with potential research participants. The authors present a model for the development and implementation of a web-based database system to support recruitment, enrollment, and retention of potential study participants in close alignment with the goals of the Wisconsin Alzheimer’s Disease Research Center (ADRC).
Methods The required data elements and major information domains for the registry were identified using a structured problem-solving and system design approach and the collaboration of a multidisciplinary team of stakeholders. The system performance, utility, and usability were assessed through multiple iterations with the users.
Results The process-oriented approach culminated in a multifaceted tool that combined contact management and potential research participant registration to assist with the challenges of recruitment and retention in clinical research. A unique feature of the registry design model was its contact management capabilities for efficient tracking of all contacts with registrants.
Limitations We have focused on the development and implementation of a system for the recruitment of older adults with specific cognitive and medical characteristics. However, our procedures for identifying data needs and database system utility and functionality can be transferred easily to other populations and settings. As with any multipurpose registry database system, careful management and training are essential to optimize efficiency.
Conclusion Adding a contact management element to the registry design significantly improved the efficiency of communication between clinical study coordinators and potential research participants, as well as the communication among coordinators.
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