Registry governance plan
A registry governance plan refers to a written, often formal, document that defines how a registry will be managed. A governance plan outlines the decision-making processes related to registry funding, operations, and data access and sharing. The goal of governance is to provide a way to ensure a registry achieves its goals and abides by applicable ethical, legal, and regulatory requirements. Committee systems may be established to accomplish the different duties outlined in the governance plan.
Registry Governance from “Registries for Evaluating Patient Outcomes: A User’s Guide” [Internet, 4th edition].
Recommendations for Improving the Quality of Rare Disease Registries [2018 published article]
Rare Diseases Registry Program (RaDaR): Develop a Governance Plan