Abstract
BackgroundInherited bleeding disorders (IBD) consist of a group of rare heterogeneous diseases, which require treatment for life. Management of these disorders is complex and costly. Therefore, good quality data of the affected population is crucial to guide policy planning. The aim of this manuscript is to describe the impact of a national, web-based registry – the Hemovidaweb Coagulopatias (HWC) – in the management of the IBD in Brazil.MethodsThe system was developed in PHP 5.0 language and is available on the internet at http://coagulopatiasweb.datasus.gov.br. The system was validated in September 2008 and launched nationally with input from January 1, 2009. HWC collects variables related to socio-demographic, clinical, laboratory and treatment data of patients with IBD.ResultsWithin 7 years, there was an increment of 90.8% on the diagnosis of IBD altogether, which increased from 11,040 in December 2007 to 21,066 in December 2014. This is now the fourth and third largest world population of patients with haemophilia and von Willebrand’s disease (vWD), respectively, according to the most recent (2015) Annual Global Survey of the World Federation of Hemophilia. The data collected provided the basis for planning and implementing home therapy, prophylaxis and immune tolerance induction (ITI), recently initiated in Brazil.ConclusionHWC was an effective tool in the increment of registration of patients with IBD in Brazil. Furthermore, it was essential to support policy planning, monitoring, evaluation and treatment. Future development should focus on surveillance, health outcomes and research. Every country should implement a national registry on IBD.
Highlights
Inherited bleeding disorders (IBD) consist of a group of rare heterogeneous diseases, which require treatment for life
Due to the fact that approximately 100% of factor concentrates (FC) purchased in Brazil is acquired centrally by the Ministry of Health (MoH), patients who demand treatment are attended at the Hemophilia treatment center (HTC)
It is reasonable to assume that approximately 100% of patients with moderate/severe forms of IBD are treated in the public sector (HTCs)
Summary
Inherited bleeding disorders (IBD) consist of a group of rare heterogeneous diseases, which require treatment for life. Management of these disorders is complex and costly. Good quality data of the affected population is crucial to guide policy planning. The aim of this manuscript is to describe the impact of a national, web-based registry – the Hemovidaweb Coagulopatias (HWC) – in the management of the IBD in Brazil. Inherited bleeding disorders (IBD) are heterogeneous group of rare diseases characterized by bleeding manifestations of variable severity. National registries are providing patients, clinicians and governments an insight into the needs of patients, an important tool to guide health policies. Registries are important for Government planning when a substantial amount of public resource
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