An innovative electronic health records system for rare and complex diseases.

BACKGROUND: There 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. RESULTS: In 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. CONCLUSION: We 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.

NMO-DBr: the Brazilian Neuromyelitis Optica Database System.

OBJECTIVE: To present the Brazilian Neuromyelitis Optica Database System (NMO-DBr), a database system which collects, stores, retrieves, and analyzes information from patients with NMO and NMO-related disorders. METHOD: NMO-DBr uses Flux, a LIMS (Laboratory Information Management Systems) for data management. We used information from medical records of patients with NMO spectrum disorders, and NMO variants, the latter defined by the presence of neurological symptoms associated with typical lesions on brain magnetic resonance imaging (MRI) or aquaporin-4 antibody seropositivity. RESULTS: NMO-DBr contains data related to patient's identification, symptoms, associated conditions, index events, recurrences, family history, visual and spinal cord evaluation, disability, cerebrospinal fluid and blood tests, MRI, optic coherence tomography, diagnosis and treatment. It guarantees confidentiality, performs cross-checking and statistical analysis. CONCLUSION: NMO-DBr is a tool which guides professionals to take the history, record and analyze information making medical practice more consistent and improving research in the area.

NMO-DBr: the Brazilian Neuromyelitis Optica Database System / NMO-DBr: o banco de dados brasileiro em neuromielite óptica

OBJECTIVE: To present the Brazilian Neuromyelitis Optica Database System (NMO-DBr), a database system which collects, stores, retrieves, and analyzes information from patients with NMO and NMO-related disorders. METHOD: NMO-DBr uses Flux, a LIMS (Laboratory Information Management Systems) for data management. We used information from medical records of patients with NMO spectrum disorders, and NMO variants, the latter defined by the presence of neurological symptoms associated with typical lesions on brain magnetic resonance imaging (MRI) or aquaporin-4 antibody seropositivity. RESULTS: NMO-DBr contains data related to patient's identification, symptoms, associated conditions, index events, recurrences, family history, visual and spinal cord evaluation, disability, cerebrospinal fluid and blood tests, MRI, optic coherence tomography, diagnosis and treatment. It guarantees confidentiality, performs cross-checking and statistical analysis. CONCLUSION: NMO-DBr is a tool which guides professionals to take the history, record and analyze information making medical practice more consistent and improving research in the area.

OBJETIVO: Apresentar o Brazilian Neuromyelitis Optica Database System (NMO-DBr), um sistema de banco de dados que coleta, arquiva, recupera e analisa informações de pacientes com neuromielite óptica (NMO) e doenças relacionadas. MÉTODO: NMO-DBr usa o sistema Flux, um LIMS (Laboratory Information Management Systems) para gerenciamento de informações. As informações foram colhidas dos prontuários de pacientes com espectro de NMO e variantes de NMO, estas últimas definidas por quadro neurológico associado a lesões encefálicas típicas à imagem pela ressonância magnética (IRM) ou à soropositividade do anticorpo anti-aquaporina-4. RESULTADOS: NMO-DBr contém dados relativos a identificação, sintomas, condições associadas, eventos índices, recorrências, história familiar, avaliação visual e da medula, incapacidade, exames do líquor e de sangue, IRM, tomografia de coerência óptica (OCT), diagnóstico e tratamento. O sistema assegura confidencialidade, cruza dados e faz análises estatísticas. CONCLUSÃO: NMO-DBr é uma ferramenta que possibilita a prática médica mais consistente e promove a pesquisa na área.