Learn About Registries

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)

Expanding the Science of Patient Input: Building Smarter Patient Registries FasterCures (link)

ClinicalTrials.gov

Rare Disease Patient Registry Coordinators

RD-Connect Registry & Biobank Finder

Genetic and Rare Diseases Information Center (GARD)

Orphanet: Registries & Biobanks