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Publisher: Peytchinski, Gospodin Iliev
ISSN: 1312 773X (Online)
Issue: 2016, vol. 22, issue 2
Subject Area: Medicine
Pages: 1166-1168
DOI: 10.5272/jimab.2016222.1166
Published online: 15 June 2016
J of IMAB 2016 Apr-Jun;22(2):1166-1168
PATIENT REGISTRIES FOR RARE DISEASES
Mariela Deliverska 
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Department of Medical Ethics and Law, Faculty of Public Health, Medical University - Sofia, Bulgaria.
ABSTRACT:
Rare diseases are diseases with a particularly low prevalence. The specificities of rare diseases - limited number of patients and scarcity of relevant knowledge and expertise - single them out as a distinctive domain of very high added value. The international reference for classification of diseases and conditions is the International Classification of Diseases (ICD), coordinated by the World Health Organization (WHO).
Patient registries and databases constitute key instruments for the development of clinical research in the field of rare diseases. Rare disease registries include not only diseases that are inherently rare, but also common diseases that are rare in specific populations, especially those defined by demographics.
Disease registries create the possibility of assessing the long-term safety and benefit of different treatments, perhaps leading to treatment algorithms that allow more choices for patients and clinicians.
Key words: Rare diseases, Register, Objectives, Public health,
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Please cite this article in PubMed Style or AMA (American Medical Association) Style:
Deliverska M. PATIENT REGISTRIES FOR RARE DISEASES. J of IMAB. 2016 Apr-Jun;22(2):1166-1168. DOI: http://dx.doi.org/10.5272/jimab.2016222.1166.
Correspondence to: Assoc. prof. Mariela Deliverska, PhD, Department of "Medical Ethics and Law", Faculty of Public Health, Medical University – Sofia; 8, Bialo more str., 1527 Sofia, Bulgaria; E-mail: mdeliverska@yahoo.com
REFERENCES:
1. European Commission: Implementation report on the Commission Communication on Rare Diseases: Europe's challenges [COM(2008) 679 final] and Council Recommendation of 8 June 2009 on an action in the field of rare diseases (2009/C 151/02). [Internet]
2. Directive 2011/24/EU of the European Parliament and of the Council of 9 March 2011 on the application of patients’ rights in cross-border healthcare. [Internet]
3. Rare Disease Registries in Europe. Orphanet Report Series. Rare Diseases collection. January 2016 [Internet]
4. EUCERD: Recommendations on Rare Disease Patient Registration and Data Collection. 5 June 2013. [Internet]
5. Prevalence and incidence of rare diseases: Bibilographic data Prevalence, incidence or number of published cases listed by diseases (in alphabetical order). Orphanet Report Series. Rare Diseases collection. March 2016, Number 1. [Internet].
Received: 18 April 2016
Published online: 15 June 2016