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

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

Leonor Teixeira (IEETA/DEGEIT - University of Aveiro, Aveiro, Portugal), Vasco Saavedra (DEGEIT - University of Aveiro, Aveiro, Portugal), Carlos Ferreira (IEETA/DEGEIT - University of Aveiro, Aveiro, Portugal) and Beatriz Sousa Santos (IEETA/DETI - University of Aveiro, Aveiro, Portugal)
Copyright: © 2015 |Pages: 16
DOI: 10.4018/IJWP.2015010104
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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.
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National Patient Registry In Chronic And Rare Diseases

In chronic and rare diseases, the patient registry is often the first step to know the incidence and estimate the prevalence of the disease (Richesson & Vehik, 2010). The registry represents a key tool for gathering scarce and relevant knowledge about the disease so as to improve the understanding of conditions and the treatment available to patients, as well as improve the planning of healthcare services.

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