Create Your Registry Plan

Develop a Governance Plan

Registries should also create and follow a written governance plan. A good governance plan will provide guidance for making decisions about how the registry is run and how and with whom data will be shared and includes the following:

You can read more about governance plans by referring to the paper “Recommendations for Improving the Quality of Rare Disease Registries.”

Visit RaDaR Manage and Share Data to learn about issues pertaining to data access, security, and privacy.


Consider Constraints
Video: Institutional Review Boards (IRBs) U.S. Department of Health and Human Services (HHS) (link)