The Portuguese National Registry for Hemophilia: Developing of a Web-based Technological Solution

Abstract

The crucial role that patient records have in the management of the rare and chronic diseases greatly increases the need to create mechanisms to facilitate the identification and management of the patient's data. Hemophilia is an X-linked congenital bleeding disorder caused by a deficiency of coagulation factor that affects the population on a ratio of 1 case for 10,000 people born. Currently, there are several countries with technological platforms to support the National Patients’ Registries (NPR) of Hemophilia and other Congenital Coagulopathies (HoCC), due to its benefits in the management of the disease. This work presents the technological platform developed in a joint initiative between the University of Aveiro (UA) and the Portuguese Association of Congenital Coagulopathies (PACC), with the purpose of creating the first NPR with HoCC in Portugal. This web application is hosted in the data center of the University of Aveiro, and is being used by the clinicians of the different Hemophilia Treatment Centers (HTC) across the country.