The Orphanet Journal of Rare Diseases published an article on the web-based Newborn Screening Connect Registry (NBS Connect) showing its benefits for clinicians and for hypothesis-driven research. NBS Connect is a self-reported patient registry network for patients affected by a disorder included in newborn screening panels. This network gathers information on recent studies and provides a resourceful database that contributes to research. The NBS Connect network aims to help in understanding the long-terms outcomes of rare disorders and developing a better knowledge of how to improve care for patients.
(source: Orphanews September 22, 2017)