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

Leonor Teixeira, Vasco Saavedra, Carlos Ferreira, Beatriz Sousa Santos

Resumo


O presente trabalho descreve uma aplicação web desenvolvida para suportar o primeiro registro nacional
de pacientes com hemofilia e outras coagulopatias congénitas em Portugal. A importância de sistemas
nacionais de registro de pacientes (SnRP) no âmbito de doenças crónicas e raras, como é o caso da
hemofilia, tem sido reconhecida por vários organismos a nível internacional e pelas entidades
governamentais nacionais. No entanto, são várias as barreiras à criação deste tipo de sistemas,
destacando-se a falta de motivação em investir num projeto que beneficia uma pequena parcela da
população, característico das doenças raras. Em Portugal recentemente estabeleceram-se as condições
para a criação do primeiro SnRP na área da hemofilia, concretizado através de um projeto que contou
com a colaboração de um grupo de profissionais clínicos pertencentes à Associação Portuguesa de
Coagulopatias Congénitas (APCC) e de um grupo de investigadores da Universidade de Aveiro.
Atualmente a solução tecnológica, já desenvolvida e testada, encontra-se instalada no data center da
Universidade de Aveiro na sua versão operacional, e está a ser usada pelos clínicos dos diferentes Centros
de Tratamento de Hemofilia (CTHs) espalhados pelo país. Em termos de números, conta, neste momento,
com cerca de 10% do número esperado de pessoas com hemofilia (PcH) do contexto português já
introduzidos, estando-se a trabalhar no sentido de se alcançarem os 100% dessa população.


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DOI: http://dx.doi.org/10.18803/capsi.v16.124-138

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