The HemoRec Database as an Example of a Rare Diseases Registry

J 2011

The HemoRec Database as an Example of a Rare Diseases Registry

ZDZIARSKA, Joanna, Krzysztof CHOJNOWSKI, Anna KLUKOWSKA, Magdalena ŁĘTOWSKA, Andrzej MITAL et. al.

Základní údaje

Originální název

The HemoRec Database as an Example of a Rare Diseases Registry

Autoři

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

Vydání

European Oncology & Haematology, 2011

Další údaje

Jazyk

angličtina

Typ výsledku

Článek v odborném periodiku

Obor

30200 3.2 Clinical medicine

Stát vydavatele

Velká Británie a Severní Irsko

Utajení

není předmětem státního či obchodního tajemství

Organizační jednotka

Lékařská fakulta

Klíčová slova anglicky

HemoRec haemophilia registry rare diseases orphan diseases bleeding disorders rare bleeding disorders von Willebrand disease

Změněno: 14. 7. 2011 13:18, Mgr. Michal Petr

Anotace

V originále

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.

Citovat

ZDZIARSKA, Joanna, Krzysztof CHOJNOWSKI, Anna KLUKOWSKA, Magdalena ŁĘTOWSKA, Andrzej MITAL, Jacek MUSIAŁ, Maria PODOLAK-DAWIDZIAK, Jerzy WINDYGA, Petra OVESNÁ, Petr BRABEC a Krystyna ZAWILSKA. The HemoRec Database as an Example of a Rare Diseases Registry. European Oncology & Haematology. 2011, roč. 7, č. 2, s. 147-150.

@article{945640,
   author = {Zdziarska, Joanna and Chojnowski, Krzysztof and Klukowska, Anna and Łętowska, Magdalena and Mital, Andrzej and Musiał, Jacek and PodolakandDawidziak, Maria and Windyga, Jerzy and Ovesná, Petra and Brabec, Petr and Zawilska, Krystyna},
   article_number = {2},
   keywords = {HemoRec haemophilia registry rare diseases orphan diseases bleeding disorders rare bleeding disorders von Willebrand disease},
   language = {eng},
   journal = {European Oncology & Haematology},
   title = {The HemoRec Database as an Example of a Rare Diseases Registry},
   volume = {7},
   year = {2011}
}

TY  - JOUR
ID  - 945640
AU  - Zdziarska, Joanna - Chojnowski, Krzysztof - Klukowska, Anna - Łętowska, Magdalena - Mital, Andrzej - Musiał, Jacek - Podolak-Dawidziak, Maria - Windyga, Jerzy - Ovesná, Petra - Brabec, Petr - Zawilska, Krystyna
PY  - 2011
TI  - The HemoRec Database as an Example of a Rare Diseases Registry
JF  - European Oncology & Haematology
VL  - 7
IS  - 2
SP  - 147-150
EP  - 147-150
KW  - HemoRec haemophilia registry rare diseases orphan diseases bleeding disorders rare bleeding disorders von Willebrand disease
N2  - 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.
ER  -

ZDZIARSKA, Joanna, Krzysztof CHOJNOWSKI, Anna KLUKOWSKA, Magdalena ŁĘTOWSKA, Andrzej MITAL, Jacek MUSIAŁ, Maria PODOLAK-DAWIDZIAK, Jerzy WINDYGA, Petra OVESNÁ, Petr BRABEC a Krystyna ZAWILSKA. The HemoRec Database as an Example of a Rare Diseases Registry. \textit{European Oncology \&{} Haematology}. 2011, roč.~7, č.~2, s.~147-150.

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