Hemo@record: O sistema Português de Registro de Pacientes com Hemofilia e Outras Coagulopatias Congénitas

Abstract

This paper describes a web application designed to support the first national registry of patients with haemophilia and other congenital coagulopathies in Portugal. The importance of national patient registry systems (nPRS), in the scope of the treatment of the chronic and rare diseases such as haemophilia, has been recognized by several institutions at an international level and by national government entities. However, there are several barriers to the creation of such systems, in particular due to the lack of motivation to invest in order to benefit only a small proportion of the population, a characteristic of rare diseases. The conditions for the creation of the first Portuguese nPRS in the field of haemophilia were recently created through a joint project between a group of medical professionals belonging to the Portuguese Association of Coagulopathies Congenital (APCC) and a group of researchers from the University of Aveiro. Currently, the technological solution is already developed, tested, and installed at the data centre of the University of Aveiro. Its operational version is being used by clinicians of different Haemophilia Treatment Centres (HTCs) around the country. The data inserted accounts for about 10% of the Portuguese population with haemophilia and all entities involved are working towards achieving 100% of this population. The data inserted accounts for about 10% of the Portuguese population with haemophilia and all entities involved are working towards achieving 100% of this population.