Web Platform to Support the Portuguese National Registry of Haemophilia and Other Inherited Blood Disorders

Abstract

Patient registries are essential tools for identifying and tracking people with a particular disease and for collecting epidemiological information, having a special role in rare and chronic diseases, where haemophilia and other inherited blood disorders (HoIBD) are classified. Web-based technologies represent an excellent solution to support different types of registries, due to the benefits that they can promote in the management of disease data. This work presents the web platform developed in a joint initiative between the Portuguese Association of Congenital Coagulopathies (PACC) and the University of Aveiro (UA), with the purpose of creating the first National Patients Registry (NPR) with HoIBD in Portugal. This application is hosted in the data centre of the UA, and at this moment it is already used by clinicians of the different Haemophilia Treatment Centres (HTC) located in Portugal, with the next challenge being the increase in the number of users.