Learn About Registries
Resources
Resources
Chapter 20: Rare Disease Registries in Registries for Evaluating Patient Outcomes: A User’s Guide, [internet]. 3rd Edition
Agency for Healthcare Research Quality (AHRQ) (link)
Frequently Asked Questions - Registries
NIH Clinical Research Trials and You (link)
Rare Disease Registries: Advancing Disease Understanding, Treatments, and Cures
Global Genes - Rare Toolkits (link)