Fig. 1.

The Rare Disease Registry Framework (RDRF) is a cloud-technology based platform that is focused on analytics

The RDRF facilitates the capture of information in the form of patient registries or clinical trials through the capture and storage of data (demographics, genotypic and phenotypic), which then in turn informs knowledge such as clinical decisions (diagnosis, treatment, and patient support). The RDRF is designed to “talk” and connect to other systems such as biobanks, registries and Electronic Health Records to capture data and ultimately provide decision support.