Understand Data Principles

Resources

FAIR Guiding Principles for scientific data management

RaDaR Tool: Data Quality Control Checklist

Data DIY: Your Involvement in Driving Understanding, Discovery, Diagnosis and Treatments for Rare Disease Global Genes (link)

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)