<abstract xmlns="http://www.w3.org/1999/xhtml"><p> The development of registries through international collaboration has facilitated better understanding of the rare bleeding disorders. Such work has shown that rare bleeding disorders are heterogeneous and need to be studied singularly, and that heterozygous patients may bleed. There is a need to understand the minimum plasma coagulant activity level to prevent spontaneous bleeding. Moreover, due to the low prevalence of rare bleeding disorders, the management of this patient population remains a challenge. Data collection on clinical history, efficacy and side effects of treatment needs to be harmonised.</p></abstract>

The development of registries through international collaboration has facilitated better understanding of the rare bleeding disorders. Such work has shown that rare bleeding disorders are heterogeneous and need to be studied singularly, and that heterozygous patients may bleed. There is a need to understand the minimum plasma coagulant activity level to prevent spontaneous bleeding. Moreover, due to the low prevalence of rare bleeding disorders, the management of this patient population remains a challenge. Data collection on clinical history, efficacy and side effects of treatment needs to be harmonised.

International databases open the door to improved care for rare bleeding disorders

The Journal of Haemophilia Practice

This work is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 License.

The development of registries through international collaboration has facilitated better understanding of the rare bleeding disorders. Such work has shown that...

International databases open the door to improved care for rare bleeding disorders

Article Category: Kd50: My Story

Published Online: Apr 21, 2018

Page range: 11 - 12

DOI: https://doi.org/10.17225/jhp00051

Keywords
rare bleeding disorders, haemophilia, Katharine Dormandy, databases

© 2018

This work is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 License.

International databases open the door to improved care for rare bleeding disorders

Article Category: Kd50: My Story

Published Online: Apr 21, 2018

Page range: 11 - 12

DOI: https://doi.org/10.17225/jhp00051

Keywordsrare bleeding disorders, haemophilia, Katharine Dormandy, databases

© 2018

This work is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 License.

Keywords
rare bleeding disorders, haemophilia, Katharine Dormandy, databases