Develop the Right Questions to Ask
Resources
Collect Patient Information
Chapter 5: Data Elements for Registries in Registries for Evaluating Patient Outcomes: A User’s Guide, [internet]. 4th Edition
Agency for Healthcare Research Quality (AHRQ) (link)
Decide on Demographic Questions
Document Permissions to Use Data
Rare Toolkit: Informed Consent - Important for Treatment Decisions and Advancing Research
Global Genes (link)
Section II: Legal and Ethical Considerations for Registries in Registries for Evaluating Patient Outcomes: A User’s Guide, [internet]. 4th Edition
Agency for Healthcare Research Quality (AHRQ) (link)