Abstract
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.
This is a preview of subscription content, log in via an institution to check access.
Access this chapter
Tax calculation will be finalised at checkout
Purchases are for personal use only
Similar content being viewed by others
References
Teixeira, L., Saavedra, V., Sousa Santos, B., Ferreira, C.: Portuguese haemophilia registry: set of variables for a computerized solution. Hamostaseologie 37, 131–137 (2017)
Evatt, B.: World Federation of Hemophilia Guide to Developing a National Patient Registry., Montréal - Québec (2005)
Lara, B., Morales, P., Blanco, I., Vendrell, M., de Gracia Roldán, J., Monreal, M., Orriols, R., Isidro, I., Abú-Shams, K., Escribano, P., Villena, V., Rodrigo, T., Vidal Plà, R., García-Yuste, M., Miravitlles, M.: Respiratory disease registries in spain: fundamentals and organization. Arch. Bronconeumol. (English Version) 47, 389–396 (2011)
Viviani, L., Zolin, A., Mehta, A., Olesen, H.V.: The European cystic fibrosis society patient registry: valuable lessons learned on how to sustain a disease registry. Orphanet J. Rare Dis. 9, 81 (2014)
EURORDIS: The Voice of Rare Disease Patients: Experiences and Expectations of over 3,000 Patients on Rare Disease Patient Registries in Europe (2013)
EUCERD: Eucerd Core Recommendations on Rare Disease Patient Registration and Data Collection to the European Commission, Member Statesand All Stakeholders (2013)
Skinner, M.W.: Treatment for all: a vision for the future. Haemophilia 12, 667–670 (2006)
Teixeira, L., Saavedra, V., Ferreira, C., Simões, J., Sousa Santos, B.: Requirements engineering using mockups and prototyping tools: developing a healthcare web-application. HIMI 2014, Part I, LNCS, vol. 8521, pp. 652–663. Springer, Heidelberg (2014)
Acknowledgments
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.
Author information
Authors and Affiliations
Corresponding author
Editor information
Editors and Affiliations
Rights and permissions
Copyright information
© 2019 Springer Nature Switzerland AG
About this paper
Cite this paper
Teixeira, L., Saavedra, V., Santos, B.S., Ferreira, C. (2019). National Patient Registry: A Web-based Technological Solution for Haemophilia in Portugal. In: Ahram, T., Karwowski, W., Taiar, R. (eds) Human Systems Engineering and Design. IHSED 2018. Advances in Intelligent Systems and Computing, vol 876. Springer, Cham. https://doi.org/10.1007/978-3-030-02053-8_148
Download citation
DOI: https://doi.org/10.1007/978-3-030-02053-8_148
Published:
Publisher Name: Springer, Cham
Print ISBN: 978-3-030-02052-1
Online ISBN: 978-3-030-02053-8
eBook Packages: Intelligent Technologies and RoboticsIntelligent Technologies and Robotics (R0)