Evaluation of a web-based registry of inherited bleeding disorders: a descriptive study of the Brazilian experience with HEMOVIDAweb Coagulopatias

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dc.creatorSuely Meireles Rezende
dc.creatorSilvia Helena Lacerda Rodrigues
dc.creatorKelly Neves Pinheiro Brito
dc.creatorDiego Lima Quintino da Silva
dc.creatorMarcos Lázaro Santo
dc.creatorBárbara de Jesus Simões
dc.creatorGuilherme Genovez
dc.creatorHelder Teixeira Melo
dc.creatorJoão Paulo Baccara Araújo
dc.creatorDanila Augusta Accioly Varella Barca
dc.date.accessioned2022-07-07T21:59:45Z
dc.date.accessioned2025-09-09T01:13:38Z
dc.date.available2022-07-07T21:59:45Z
dc.date.issued2017-02
dc.format.mimetypepdf
dc.identifier.doihttps://doi.org/10.1186/s13023-016-0560-6
dc.identifier.issn1750-1172
dc.identifier.urihttps://hdl.handle.net/1843/43046
dc.languageeng
dc.publisherUniversidade Federal de Minas Gerais
dc.relation.ispartofOrphanet Journal of Rare Diseases
dc.rightsAcesso Aberto
dc.subjectSangramento
dc.subjectHemofilia
dc.titleEvaluation of a web-based registry of inherited bleeding disorders: a descriptive study of the Brazilian experience with HEMOVIDAweb Coagulopatias
dc.typeArtigo de periódico
local.citation.volume12
local.description.resumoBackground: 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. 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. Methods: The 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. Results: Within 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. Conclusion: HWC 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.
local.publisher.countryBrasil
local.publisher.departmentMED - DEPARTAMENTO DE CLÍNICA MÉDICA
local.publisher.initialsUFMG
local.url.externahttps://ojrd.biomedcentral.com/articles/10.1186/s13023-016-0560-6#citeas

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