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

Autor: Rezende SM; Department of Internal Medicine, Faculty of Medicine, Universidade Federal de Minas Gerais, Avenida Alfredo Balena, 190 - 2nd floor- room 243, Belo Horizonte, Minas Gerais, ZIP 30130-110, Brazil. srezende@medicina.ufmg.br.; Coordenação Geral de Sangue e Hemoderivados, Ministry of Health, SAF Sul, Edifício Premium, Torre II, room 202, CEP:70070-600, Brasília, Distrito Federal, Brazil. srezende@medicina.ufmg.br., Rodrigues SH; Coordenação Geral de Sangue e Hemoderivados, Ministry of Health, SAF Sul, Edifício Premium, Torre II, room 202, CEP:70070-600, Brasília, Distrito Federal, Brazil., Brito KN; Coordenação Geral de Sangue e Hemoderivados, Ministry of Health, SAF Sul, Edifício Premium, Torre II, room 202, CEP:70070-600, Brasília, Distrito Federal, Brazil., da Silva DL; Coordenação Geral de Sangue e Hemoderivados, Ministry of Health, SAF Sul, Edifício Premium, Torre II, room 202, CEP:70070-600, Brasília, Distrito Federal, Brazil., Santo ML; Departamento de Informática do Sistema Único de Saúde (DATASUS), Rua México - Centro, Rio de Janeiro, ZIP 20031-143, Brazil., Simões BJ; Coordenação Geral de Sangue e Hemoderivados, Ministry of Health, SAF Sul, Edifício Premium, Torre II, room 202, CEP:70070-600, Brasília, Distrito Federal, Brazil., Genovez G; Hemocentro de Santa Catarina, Av. Othon Gama D'Eça, 756 Centro, Florianópolis, Santa Catarina, ZIP 88015-240, Brazil., Melo HT; Coordenação Geral de Sangue e Hemoderivados, Ministry of Health, SAF Sul, Edifício Premium, Torre II, room 202, CEP:70070-600, Brasília, Distrito Federal, Brazil., Araújo JP; Coordenação Geral de Sangue e Hemoderivados, Ministry of Health, SAF Sul, Edifício Premium, Torre II, room 202, CEP:70070-600, Brasília, Distrito Federal, Brazil., Barca DA; DVB Consultoria em Gestão em Saúde, Brasília, Distrito Federal, Brazil.
Jazyk: angličtina
Zdroj: Orphanet journal of rare diseases [Orphanet J Rare Dis] 2017 Feb 10; Vol. 12 (1), pp. 27. Date of Electronic Publication: 2017 Feb 10.
DOI: 10.1186/s13023-016-0560-6
Abstrakt: Background: 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.
Databáze: MEDLINE
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