Understand Data Principles

Know About Data Privacy & Security

As a good data steward, you need to understand the importance of protecting the privacy of your registry members and securing their data. Data privacy protects the use of the data and puts policies in place to ensure that patient information is being collected, shared, and used in appropriate ways. Data security refers to protecting data and to having safeguards in place to prevent malicious computer attacks and unauthorized access to data.

RaDaR Review Data Protection Plan provides information about protecting your registry’s data.

Rules have been created to protect people who share their personal and rare disease information. As a registry owner, you should become familiar with the rules, regulations, and/or laws that have been created to protect data. The “Learn About Ethical and Legal Aspects“ section provides information about other rules and regulations you should be familiar with.

Chapter 7. Principles of Registry Ethics, Data Ownership, and Privacy in Registries for Evaluating Patient Outcomes: A User’s Guide [Internet], 4th edition provides more information about these rules and how they might pertain to registries