Research Registry Toolkit

The Research Registry Toolkit is designed to support teams creating and managing research registries at UNC-Chapel Hill and beyond.

The Toolkit includes registry-relevant content about recruitment and engagement, data, and regulatory topics, and focuses solely on registries used for research purposes.

Each section includes examples, best practices, and tools to guide conversations about research registry development and maintenance. The content was designed to be read as a whole or by section.

Visit the Research Registry Toolkit to learn more.


For the purposes of the Toolkit, a registry is broadly defined as “an organized system that uses observational study method to collect uniform data (clinical and other) to evaluate specified outcomes for a population defined by a particular disease, condition, or exposure and that serves one or more predetermined scientific, clinical or policy purposes”.1

1 Gliklich RE, Dreyer NA, Leavy MB, eds. Registries for Evaluating Patient Outcomes: A User’s Guide