NMO-DBr: the Brazilian Neuromyelitis Optica Database System

Lana-Peixoto, Marco Aurélio; Talim, Livia E.; Faria-Campos, Alessandra C.; Campos, Sérgio Vale Aguiar; Rocha, Cristiane Franklin; Hanke, Lucas; Talim, Natália; Batista, Paulo Henrique Mariano; Araújo, Carolina Reis; Kleinpaul, Rodrigo

doi:10.1590/s0004-282x2011000500021

Cited by 8 publications

(5 citation statements)

References 35 publications

(68 reference statements)

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“…Because it is a rare disease, multicenter studies and meta-analyses are needed to achieve better epidemiological characterization of NMO and NMOSD. The establishment of databases, such as NEMOS 17 and NMO-DBr 28 , is fundamental. In conclusion, the characteristics exhibited by the present series of Brazilian patients with NMO reinforce those reported for other Western populations.…”

Section: Discussionmentioning

confidence: 99%

Neuromyelitis optica: phenotypic characteristics in a Brazilian case series

Negro¹,

Marinho²,

Alvarenga

2017

Arq. Neuro-Psiquiatr.

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The definition of neuromyelitis optica (NMO) is still evolving. In 2015, the International Panel for NMO Diagnosis was convened to develop revised diagnostic criteria. There have been few studies on NMO in the Brazilian population. Objective To describe the characteristics of 34 Brazilian NMO patients. To evaluate the contribution of the 2015 criteria to the diagnosis of NMO spectrum disorders (NMOSD) in 40 patients with longitudinal extensive transverse myelitis (LEMT). Methods This is a retrospective, descriptive and analytic study. Results Among NMO patients, there was a predominance of women, with onset in the fourth decade of life, and AQP4-IgG seropositivity in 73.5%. The diagnosis of NMOSD was established in 37.5% of LETM patients according to AQP4-IgG positivity and in 5% of LETM patients if the AQP4-IgG result was unknown. Conclusions The characteristics of this series are similar to those of other Western populations. The AQP4-IgG testing assists in the diagnosis of NMOSD.

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Section: Discussionmentioning

confidence: 99%

Neuromyelitis optica: phenotypic characteristics in a Brazilian case series

Negro¹,

Marinho²,

Alvarenga

2017

Arq. Neuro-Psiquiatr.

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“…A complete workflow for storage and management of data from NMO patients has been created to be used in the FluxMED System, along with a database for data storage [ 18 ]. The workflow consists of 16 activities (Figure 2 ) and each of those has an individual screen in the system.…”

Section: Ehr Systems Developedmentioning

confidence: 99%

An innovative electronic health record system for rare and complex diseases

et al. 2015

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BackgroundThere exists a large number of rare and complex diseases that are neglected due to the difficulty in diagnosis and treatment. Being rare, they normally do not justify the costs of developing an especialized Electronic Health Record (EHR) system to assist doctors and patients of these diseases. In this work we propose the use of Computer applications known as Laboratory Information Management Systems (LIMS) to address this issue.ResultsIn this work we describe a fully customizable EHR system that uses a workflow based LIMS with an easy to adapt interface for data collection and retrieval. This system can easily be customized to manage different types of medical data. The customization for a new disease can be done in a few hours with the help of a specialist.ConclusionWe have used the proposed system to manage data from patients of three complex diseases: neuromyelitis optica, paracoccidioidomycosis and adrenoleukodistrofy. These diseases have very different symptoms, exams, diagnostics and treatments, but the FluxMED system is able to manage these data in a highly specialized manner without any modifications to its code.

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“…In this case the user has selected the first of the new activities, and the right side frame shows the data that can be entered to register this activity. This example is [8]. FluxMED allows each activity to have a different set of access permissions, being an ideal platform to illustrate the functionalities of IAF protocols.…”

Section: Introductionmentioning

confidence: 99%

Managing and sharing health data through Information Accountability protocols

Grunwell

Batista

Campos

et al. 2015

2015 17th International Conference on E-Health Networking, Application &Amp; Services (HealthCom)

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Concerns over the security and privacy of patient information are one of the biggest hindrances to sharing health information and the wide adoption of eHealth systems. At present, there are competing requirements between healthcare consumers' (i.e. patients) requirements and healthcare professionals' (HCP) requirements. While consumers want control over their information, healthcare professionals want access to as much information as required in order to make wellinformed decisions and provide quality care. In order to balance these requirements, the use of an Information Accountability Framework devised for eHealth systems has been proposed. In this paper, we take a step closer to the adoption of the Information Accountability protocols and demonstrate their functionality through an implementation in FluxMED, a customisable EHR system.

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NMO-DBr: the Brazilian Neuromyelitis Optica Database System

Cited by 8 publications

References 35 publications

Neuromyelitis optica: phenotypic characteristics in a Brazilian case series

Neuromyelitis optica: phenotypic characteristics in a Brazilian case series

An innovative electronic health record system for rare and complex diseases

Managing and sharing health data through Information Accountability protocols

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