Learn About Registries
Resources
Learn What Is a Registry
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)
Know What Information to Collect
Check Whether a Registry Exists
ClinicalTrials.gov
National Library of Medicine (NLM) (link)
Genetic and Rare Diseases Information Center (GARD)
National Center for Advancing Translational Sciences (NCATS) (link)
Orphanet: Registries & Biobanks
Orphanet (link)