Understand Data Principles
It is critical to fully understand what data are, and the best practices and guiding principles that a registry should follow when collecting, maintaining, and sharing data. Having entrusted you with information about themselves and their rare disease, registry participants expect you to act in their best interest with respect to being transparent and open. Researchers need to have confidence in the quality of your registry’s data.
Understand What is Data
The FAIR Guiding Principles for scientific data management and stewardship 2016 Article in Nature: Scientific Data (link)
Know About Data Privacy & Security
Chapter 7: Principles of Registry Ethics, Data Ownership, and Privacy in Registries for Evaluating Patient Outcomes: A User’s Guide, [internet]. 4th Edition Agency for Healthcare Research Quality (AHRQ) (link)