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 dis...

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Autores principales: Faria-Campos, Alessandra C, Hanke, Lucas A, Batista, Paulo HS, Garcia, Vinicius, Campos, Sérgio VA
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2015
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4686787/
https://www.ncbi.nlm.nih.gov/pubmed/26695733
http://dx.doi.org/10.1186/1471-2105-16-S19-S4
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author Faria-Campos, Alessandra C
Hanke, Lucas A
Batista, Paulo HS
Garcia, Vinicius
Campos, Sérgio VA
author_facet Faria-Campos, Alessandra C
Hanke, Lucas A
Batista, Paulo HS
Garcia, Vinicius
Campos, Sérgio VA
author_sort Faria-Campos, Alessandra C
collection PubMed
description 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.
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spelling pubmed-46867872015-12-31 An innovative electronic health records system for rare and complex diseases Faria-Campos, Alessandra C Hanke, Lucas A Batista, Paulo HS Garcia, Vinicius Campos, Sérgio VA BMC Bioinformatics Research 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. BioMed Central 2015-12-16 /pmc/articles/PMC4686787/ /pubmed/26695733 http://dx.doi.org/10.1186/1471-2105-16-S19-S4 Text en Copyright © 2015 Faria-Campos et al. http://creativecommons.org/licenses/by/4.0 This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.
spellingShingle Research
Faria-Campos, Alessandra C
Hanke, Lucas A
Batista, Paulo HS
Garcia, Vinicius
Campos, Sérgio VA
An innovative electronic health records system for rare and complex diseases
title An innovative electronic health records system for rare and complex diseases
title_full An innovative electronic health records system for rare and complex diseases
title_fullStr An innovative electronic health records system for rare and complex diseases
title_full_unstemmed An innovative electronic health records system for rare and complex diseases
title_short An innovative electronic health records system for rare and complex diseases
title_sort innovative electronic health records system for rare and complex diseases
topic Research
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4686787/
https://www.ncbi.nlm.nih.gov/pubmed/26695733
http://dx.doi.org/10.1186/1471-2105-16-S19-S4
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