National Patient Registry: A Web-based Technological Solution for Haemophilia in Portugal

摘要

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.