Background: In 2018, the World Federation of Hemophilia (WFH) established the need to create a World Bleeding Disorders Registry (WBDR), a database which aim was to unify the network of hemophilia treatment centers, in order to collect standardized data on hemophiliac patients and guide medical practice.

In 2020 the WBDR has registered 7,208 patients with hemophilia (84% A; 15% B) in 86 treatment centers distributed in 33 countries, with no representation from Spain. The Spanish Ministry of Health has not yet published any hemophilia registry.

Aims: To present a hemophiliac patients’ registry in the Principality of Asturias, first community in Spain to develop such record.

Methods: The Redcap web tool was introduced to create a shared environment that would allow working both with the information already available and with new variables. Such information was loaded and verified from local files to the web registry.

Results: Asturias’ population, according to the latest census of the Spanish National Institute of Statistics, is 1,011,792 inhabitants. Of the 66 hemophiliac patients, with age ranging from 3 to 86 (median 35), 92.4% are type A and 7% type B. 50% of the cases are mild; 6.1% are moderate and 43.9% are severe. 45.5% of them receive prophylactic treatment while 54.5% receive it on demand. The most used ones are DDAVP, Elocta, Nuwiq and Hemlibra, according to the distribution of graph 1. Regarding the development of inhibitor, it was 5% in hemophilia A and 1.5% in hemophilia B.

Conclusion(s): To create a WBDR is not only a mandate from the WFH, but is also necessary to estimate the social and health impact on this population. It aims to improve hemophiliac patients’ quality of life. This is the first registry of hemophilia in the Spanish state, which is currently being extended to the rest of congenital coagulopathies.

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Graph 1.

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ISTH Congress Abstracts - https://abstracts.isth.org/abstract/hemophilia-registry-in-a-province-in-nothern-spain/