Publication details

The HemoRec Database as an Example of a Rare Diseases Registry

Authors

ZDZIARSKA Joanna CHOJNOWSKI Krzysztof KLUKOWSKA Anna ŁĘTOWSKA Magdalena MITAL Andrzej MUSIAŁ Jacek PODOLAK-DAWIDZIAK Maria WINDYGA Jerzy OVESNÁ Petra BRABEC Petr ZAWILSKA Krystyna

Year of publication 2011
Type Article in Periodical
Magazine / Source European Oncology & Haematology
MU Faculty or unit

Faculty of Medicine

Citation
Field Oncology and hematology
Keywords HemoRec haemophilia registry rare diseases orphan diseases bleeding disorders rare bleeding disorders von Willebrand disease
Description Rare diseases constitute a major burden on public health, mainly due to the high cost of therapy and logistical difficulties (for example, the need to organise a network of designated treatment centres). National and international registries of rare diseases facilitate data collection and analysis for demographic, economic and research purposes. They are also useful for treatment centres and other healthcare providers and pharmaceutical companies developing orphan drugs. We present the HemoRec database, implemented in 2006 in six European countries, as an example of an international registry of inherited bleeding disorders. HemoRec is used in 15 Polish treatment centres and stores data on 1,100 patients with inherited bleeding disorders (amounting to 24.9% of all patients registered in the Polish central registry held at the Institute of Haematology and Blood Transfusion in Warsaw). It can be developed in the future into a national platform of data collection and exchange in the network of Polish, and hopefully also European, haemophilia treatment centres.

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