COLLABORATIVE IT PLATFORM FOR RARE DISEASES

Dragan Jankovic, Tatjana Stankovic, Branimir Todorovic

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 for 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.

References

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Paper Citation


in Harvard Style

Jankovic D., Stankovic T. and Todorovic B. (2011). COLLABORATIVE IT PLATFORM FOR RARE DISEASES . In Proceedings of the International Conference on Health Informatics - Volume 1: HEALTHINF, (BIOSTEC 2011) ISBN 978-989-8425-34-8, pages 309-314. DOI: 10.5220/0003171003090314


in Bibtex Style

@conference{healthinf11,
author={Dragan Jankovic and Tatjana Stankovic and Branimir Todorovic},
title={COLLABORATIVE IT PLATFORM FOR RARE DISEASES},
booktitle={Proceedings of the International Conference on Health Informatics - Volume 1: HEALTHINF, (BIOSTEC 2011)},
year={2011},
pages={309-314},
publisher={SciTePress},
organization={INSTICC},
doi={10.5220/0003171003090314},
isbn={978-989-8425-34-8},
}


in EndNote Style

TY - CONF
JO - Proceedings of the International Conference on Health Informatics - Volume 1: HEALTHINF, (BIOSTEC 2011)
TI - COLLABORATIVE IT PLATFORM FOR RARE DISEASES
SN - 978-989-8425-34-8
AU - Jankovic D.
AU - Stankovic T.
AU - Todorovic B.
PY - 2011
SP - 309
EP - 314
DO - 10.5220/0003171003090314