<abstract xmlns="http://www.w3.org/1999/xhtml"><p>Effective management of any group of diseases in the population, including rare diseases, needs to know the basic epidemiological parameters. The issue of rare diseases in the concept of state health policy has absented in many countries due to the difficulty of diagnosis, treatment and subsequent care of such patients. There is no conception of collection and processing of data regarding rare diseases, neither is there any unified conception of diagnosis, treatment, and overall health care of patients with rare diseases. The central availability of data concerning rare diseases is very low for different medical specialisations which deal with this issue. There exist only partial pieces of information, which are spread across different workplaces. The SR should participate in European information network on rare diseases. The SR is a member of ICBDSR (http://www.icbdsr.org) but not EUROCAT (http://www.eurocat-network.eu/), which is necessary to be changed!</p><p>The National Health Information Centre (NHIC) is a source of rare diseases in the following databases: National register of congenital anomalies, National cancer registry, Registry of patients with diabetes mellitus 1, National register of congenital anomaly of heart. The key to the knowledge of the real state of disease incidence rate in the population is an effective collaboration between relevant partners (including implementation of systematic control mechanisms), which is a basis for success.</p></abstract>

Effective management of any group of diseases in the population, including rare diseases, needs to know the basic epidemiological parameters. The issue of rare diseases in the concept of state health policy has absented in many countries due to the difficulty of diagnosis, treatment and subsequent care of such patients. There is no conception of collection and processing of data regarding rare diseases, neither is there any unified conception of diagnosis, treatment, and overall health care of patients with rare diseases. The central availability of data concerning rare diseases is very low for different medical specialisations which deal with this issue. There exist only partial pieces of information, which are spread across different workplaces. The SR should participate in European information network on rare diseases. The SR is a member of ICBDSR (http://www.icbdsr.org) but not EUROCAT (http://www.eurocat-network.eu/), which is necessary to be changed!The National Health Information Centre (NHIC) is a source of rare diseases in the following databases: National register of congenital anomalies, National cancer registry, Registry of patients with diabetes mellitus 1, National register of congenital anomaly of heart. The key to the knowledge of the real state of disease incidence rate in the population is an effective collaboration between relevant partners (including implementation of systematic control mechanisms), which is a basis for success.

National Health Information Centre Task Regarding the Data Availability on Rare Diseases in the SR / Úloha národného centra zdravotníckych informácií v dostupnosti údajov o zriedkavých chorobách v SR

National Health Information Centre, Bratislava, Slovakia

European Pharmaceutical Journal

Effective management of any group of diseases in the population, including rare diseases, needs to know the basic epidemiological parameters. The issue of rare...

National Health Information Centre Task Regarding the Data Availability on Rare Diseases in the SR / Úloha národného centra zdravotníckych informácií v dostupnosti údajov o zriedkavých chorobách v SR

Publié en ligne: 20 avr. 2013

Pages: 37 - 40

DOI: https://doi.org/10.2478/afpuc-2013-0007

This content is open access.