National Patient Registry: A Web-based Technological Solution for Haemophilia in Portugal
Several national and international entities have recognized the importance of national patient registry systems, as well as their benefits in the treatment of chronic and rare diseases, such as haemophilia. Despite this recognition, due to the lack of motivation to invest in systems that benefit a small proportion of the population – characteristic of rare diseases – there are several barriers to create this type of application. This paper describes a Web-based solution to support the national haemophilia registry in Portugal, the first created in this country for this type of chronic and rare disease. Currently, the technological solution is already developed, tested, and installed at the data centre of a Portuguese University, and clinicians of different Haemophilia Treatment Center around the country have access to the operational version, via web.
KeywordsNational patient registry Web application Chronic and rare diseases Haemophilia
This work is funded by National Funds through FCT - Foundation for Science and Technology, in the context of the project PEst-OE/EEI/UI0127/2014. We would also like to acknowledge the valuable contribution of the clinical professionals for all the help in the requirements analysis.
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