National Patient Registry with Hemophilia and other Congenital Coagulopathies: The Portuguese system

This work presents the recently developed Portuguese Patient Registry with Hemophilia and other Congenital Coagulopathies. It is a web-based application that aims to collect a set demographic, social and clinical data (categorized by diagnostic, treatment and follow-up data) of people with hemophilia and other congenital coagulopathies (H&oCC) in a national universe. This project was developed in collaboration with a group of clinicians belonging to the Portuguese Association of Congenital Coagulopathies (APCC) and the technological solution is currently installed in the data center of the University of Aveiro, to be used by clinicians of different Hemophilia Treatment Centers (HTC) located across the country.