RaDaR & ERN registries

RaDaR — the Rare Diseases Registry Program — is the NIH/NCATS framework providing toolkits, methodology guidance and registry templates for patient and condition-specific rare-disease registries in the U.S. The European Reference Networks (ERNs), funded by the European Commission since 2017, group expert centres across the EU into 24 networks (rare cardiac disease, ITHACA for congenital malformations, EURO-NMD for neuromuscular disease, etc.), each operating shared registries and clinical care pathways.

Together they form the longitudinal patient-level infrastructure underpinning natural-history studies, trial readiness, post-market drug surveillance and registry-based trials in rare disease. Access to individual registry data is typically governed by each registry's data-access committee.