Registry of Hemophilia and other bleeding disorders in Syria

Ali, Tahani Bin; Schved, Jean‐François

doi:10.1111/j.1365-2516.2012.02862.x

Cited by 6 publications

(4 citation statements)

References 11 publications

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“…Among populations at high risk ( Table 2 ), high HCV prevalence ranging from 48.9% to 75% was reported among hemodialysis patients [ 92 – 94 ]. Meanwhile, HCV prevalence among drug users (injecting and non-injecting) and among hemophilia patients was measured at 21% [ 95 ] and 20.5% [ 96 ], respectively.…”

Section: Resultsmentioning

confidence: 99%

The Epidemiology of Hepatitis C Virus in the Fertile Crescent: Systematic Review and Meta-Analysis

2015

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ObjectiveTo characterize hepatitis C virus (HCV) epidemiology in countries of the Fertile Crescent region of the Middle East and North Africa (MENA), namely Iraq, Jordan, Lebanon, Palestine, and Syria.MethodsWe systematically reviewed and synthesized available records of HCV incidence and prevalence following PRISMA guidelines. Meta-analyses were implemented using a DerSimonian-Laird random effects model with inverse weighting to estimate the country-specific HCV prevalence among the various at risk population groups.ResultsWe identified eight HCV incidence and 240 HCV prevalence measures in the Fertile Crescent. HCV sero-conversion risk among hemodialysis patients was 9.2% in Jordan and 40.3% in Iraq, and ranged between 0% and 3.5% among other populations in Iraq over different follow-up times. Our meta-analyses estimated HCV prevalence among the general population at 0.2% in Iraq (range: 0–7.2%; 95% CI: 0.1–0.3%), 0.3% in Jordan (range: 0–2.0%; 95% CI: 0.1–0.5%), 0.2% in Lebanon (range: 0–3.4%; 95% CI: 0.1–0.3%), 0.2% in Palestine (range: 0–9.0%; 95% CI: 0.2–0.3%), and 0.4% in Syria (range: 0.3–0.9%; 95% CI: 0.4–0.5%). Among populations at high risk, HCV prevalence was estimated at 19.5% in Iraq (range: 0–67.3%; 95% CI: 14.9–24.5%), 37.0% in Jordan (range: 21–59.5%; 95% CI: 29.3–45.0%), 14.5% in Lebanon (range: 0–52.8%; 95% CI: 5.6–26.5%), and 47.4% in Syria (range: 21.0–75.0%; 95% CI: 32.5–62.5%). Genotypes 4 and 1 appear to be the dominant circulating strains.ConclusionsHCV prevalence in the population at large appears to be below 1%, lower than that in other MENA sub-regions, and tending towards the lower end of the global range. However, there is evidence for ongoing HCV transmission within medical facilities and among people who inject drugs (PWID). Migration dynamics appear to have played a role in determining the circulating genotypes. HCV prevention efforts should be targeted, and focus on infection control in clinical settings and harm reduction among PWID.

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Section: Resultsmentioning

confidence: 99%

The Epidemiology of Hepatitis C Virus in the Fertile Crescent: Systematic Review and Meta-Analysis

2015

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“…Within the last years, there has been a substantial progress on the implementation of registries devoted to IBD in many countries [ 2 – 10 ]. However, many countries still do not have a national registry devoted to IBD [ 11 ] nor provide registry with good quality data [ 12 ].…”

Section: Introductionmentioning

confidence: 99%

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

Rezende

Rodrigues

Brito

et al. 2017

Orphanet J Rare Dis

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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.

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“…De entre as várias vantagens que podem estar associadas a um SnRP, a FMH (Evatt, 2005) Canadá (Walker et al, 1995); Áustria Sylvia Reitter et al, 2009); Itália (Iorio, Oliovecchio, Morfini & Mannucci, 2008;Taruscio, Kodra, Ferrari & Vittozzi, 2014); Polónia (Zdziarska et al, 2011); Espanha (Aznar, Abad-Franch, Cortina & Marco, 2009); Suíça (Brand & von der Weid, 2009); Reino Unido (Hay, 2004); Alemanha (Hesse, Haschberger, Heiden, Seitz & Schramm, 2013); Síria (Ali & Schved, 2012)…”

Section: Números E Factos Sobre Registros De Pacientes De Doenças Rarasunclassified

Hemo@record: The Portuguese System for Registration of Patients with Haemophilia and Other Congenital Coagulopathies

Teixeira

Saavedra

Ferreira

et al. 2016

Atas Da 16ª Conferência Da Associação Portuguesa De Sistemas De Informação

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O presente trabalho descreve uma aplicação web desenvolvida para suportar o primeiro registro nacional de pacientes com hemofilia e outras coagulopatias congénitas em Portugal. A importância de sistemas nacionais de registro de pacientes (SnRP) no âmbito de doenças crónicas e raras, como é o caso da hemofilia, tem sido reconhecida por vários organismos a nível internacional e pelas entidades governamentais nacionais. No entanto, são várias as barreiras à criação deste tipo de sistemas, destacando-se a falta de motivação em investir num projeto que beneficia uma pequena parcela da população, característico das doenças raras. Em Portugal recentemente estabeleceram-se as condições para a criação do primeiro SnRP na área da hemofilia, concretizado através de um projeto que contou com a colaboração de um grupo de profissionais clínicos pertencentes à Associação Portuguesa de Coagulopatias Congénitas (APCC) e de um grupo de investigadores da Universidade de Aveiro. Atualmente a solução tecnológica, já desenvolvida e testada, encontra-se instalada no data center da Universidade de Aveiro na sua versão operacional, e está a ser usada pelos clínicos dos diferentes Centros de Tratamento de Hemofilia (CTHs) espalhados pelo país. Em termos de números, conta, neste momento, com cerca de 10% do número esperado de pessoas com hemofilia (PcH) do contexto português já introduzidos, estando-se a trabalhar no sentido de se alcançarem os 100% dessa população.

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Registry of Hemophilia and other bleeding disorders in Syria

Cited by 6 publications

References 11 publications

The Epidemiology of Hepatitis C Virus in the Fertile Crescent: Systematic Review and Meta-Analysis

The Epidemiology of Hepatitis C Virus in the Fertile Crescent: Systematic Review and Meta-Analysis

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

Hemo@record: The Portuguese System for Registration of Patients with Haemophilia and Other Congenital Coagulopathies

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