Authors:
Dragan Jankovic
;
Tatjana Stankovic
and
Branimir Todorovic
Affiliation:
University of Nis, Serbia
Keyword(s):
Rare diseases, Collaborative IT platform, Web services, Data mining, OLAP, Medical data analyses, Electronic healthcare record.
Related
Ontology
Subjects/Areas/Topics:
Artificial Intelligence
;
Biomedical Engineering
;
Business Analytics
;
Cloud Computing
;
Data Engineering
;
Data Mining
;
Databases and Datawarehousing
;
Databases and Information Systems Integration
;
Datamining
;
e-Health
;
e-Health for Public Health
;
Enterprise Information Systems
;
Health Information Systems
;
Platforms and Applications
;
Sensor Networks
;
Signal Processing
;
Soft Computing
;
Software Systems in Medicine
Abstract:
For a long time the rare diseases have not been in the "focus" of pharmaceutical companies and research because of potentially lower wages and the fact that very few institutions have a representative set of data necessary for quality research. Unfortunately, patients suffering from rare diseases are left in the margins of many societies, their drugs are usually not on the “positive lists” of insurance organisations and their price is extremely high. The number of rare diseases is between 6000 and 8000 and the estimated number of cases is about 5%, i.e. about 250 million. This paper presents Collaborative IT platform model for rare diseases by reviewing four important aspects: creating a national register of people suffering from rare diseases that can potentially grow into an international; establishment of a central repository for rare diseases with a collections of medical data characteristic for rare diseases, with modern data analysis tools in order to create better conditions f
or scientific research in the field of rare diseases, where some tools would be oriented to help doctors to more easily and with less cost came to proper diagnosis; improving living conditions and treatment of patients by forming a set of virtual patient’s associations to exchange experiences and find useful information; to create conditions for better education of medical workers and patients. The proposed platform is the subject of the project that we apply to the call for proposals of the Ministry of Science and Technological Development (MSc&TD) in the Republic of Serbia for a period 2011 - 2014.
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