A registry for Dravet syndrome: the Italian experience.

The Residras registry represents a large collection of standardised national data for the DS population. The registry platform relies on a shareable and interoperable framework which promotes multicentre high-quality data collection. In the future such integrated platform may represent an invaluable asset for easing access to cohorts of patients that may benefit from clinical trials with emerging novel therapies, for drug safety monitoring, and for delineating natural history. Its framework makes it improvable based on growing experience with its use and easily adaptable to other rare and complex epilepsy syndromes.