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Regional COVID-19 registry in Khuzestan, Iran: A study protocol and lessons learned from a pilot implementation

Disease registry systems provide a strong information infrastructure for decision-making and research. The purpose of this study is to describe the implementation method and protocol of the COVID-19 registry in Khuzestan province, Iran. We established a steering committee and formulated the purposes...

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Autores principales: Zarei, Javad, Dastoorpoor, Maryam, Jamshidnezhad, Amir, Cheraghi, Maria, Sheikhtaheri, Abbas
Formato: Online Artículo Texto
Lenguaje:English
Publicado: The Authors. Published by Elsevier Ltd. 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7816600/
https://www.ncbi.nlm.nih.gov/pubmed/33495736
http://dx.doi.org/10.1016/j.imu.2021.100520
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author Zarei, Javad
Dastoorpoor, Maryam
Jamshidnezhad, Amir
Cheraghi, Maria
Sheikhtaheri, Abbas
author_facet Zarei, Javad
Dastoorpoor, Maryam
Jamshidnezhad, Amir
Cheraghi, Maria
Sheikhtaheri, Abbas
author_sort Zarei, Javad
collection PubMed
description Disease registry systems provide a strong information infrastructure for decision-making and research. The purpose of this study is to describe the implementation method and protocol of the COVID-19 registry in Khuzestan province, Iran. We established a steering committee and formulated the purposes of the registry. Then, based on reviewing the literature, and expert panels, the minimum data set, the data collection forms and the web-based software were developed. Data collection is done retrospectively through Hospital Information Systems, Medical Care Monitoring Center system (MCMC), Management of Communicable Disease Prevention and Control system (MCDPC) as well as, patients' records. For prospective data collection, the data collection forms are compiled with patients' medical records by the medical staff and are then entered into the registry system. We collect patients' administrative and demographic data, history and physical examinations, test and imaging results, disease progression, treatment, outcomes, and follow-ups of the confirmed and suspected inpatients and outpatients. From April 20 to December 5, 2020, the data of 4,812 confirmed cases and 7,113 suspected cases were collected from two COVID-19 referral hospitals. Based on our experience, recording information along with providing care for patients and putting patients' data registration in the medical staff's routine, structuring data, having a flexible technical team and rapid software development for multiple and continuous updates, automating data collection by connecting the registry to existing information systems and having different incentives, the registration process can be strengthened.
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spelling pubmed-78166002021-01-21 Regional COVID-19 registry in Khuzestan, Iran: A study protocol and lessons learned from a pilot implementation Zarei, Javad Dastoorpoor, Maryam Jamshidnezhad, Amir Cheraghi, Maria Sheikhtaheri, Abbas Inform Med Unlocked Article Disease registry systems provide a strong information infrastructure for decision-making and research. The purpose of this study is to describe the implementation method and protocol of the COVID-19 registry in Khuzestan province, Iran. We established a steering committee and formulated the purposes of the registry. Then, based on reviewing the literature, and expert panels, the minimum data set, the data collection forms and the web-based software were developed. Data collection is done retrospectively through Hospital Information Systems, Medical Care Monitoring Center system (MCMC), Management of Communicable Disease Prevention and Control system (MCDPC) as well as, patients' records. For prospective data collection, the data collection forms are compiled with patients' medical records by the medical staff and are then entered into the registry system. We collect patients' administrative and demographic data, history and physical examinations, test and imaging results, disease progression, treatment, outcomes, and follow-ups of the confirmed and suspected inpatients and outpatients. From April 20 to December 5, 2020, the data of 4,812 confirmed cases and 7,113 suspected cases were collected from two COVID-19 referral hospitals. Based on our experience, recording information along with providing care for patients and putting patients' data registration in the medical staff's routine, structuring data, having a flexible technical team and rapid software development for multiple and continuous updates, automating data collection by connecting the registry to existing information systems and having different incentives, the registration process can be strengthened. The Authors. Published by Elsevier Ltd. 2021 2021-01-19 /pmc/articles/PMC7816600/ /pubmed/33495736 http://dx.doi.org/10.1016/j.imu.2021.100520 Text en © 2021 The Authors Since January 2020 Elsevier has created a COVID-19 resource centre with free information in English and Mandarin on the novel coronavirus COVID-19. The COVID-19 resource centre is hosted on Elsevier Connect, the company's public news and information website. Elsevier hereby grants permission to make all its COVID-19-related research that is available on the COVID-19 resource centre - including this research content - immediately available in PubMed Central and other publicly funded repositories, such as the WHO COVID database with rights for unrestricted research re-use and analyses in any form or by any means with acknowledgement of the original source. These permissions are granted for free by Elsevier for as long as the COVID-19 resource centre remains active.
spellingShingle Article
Zarei, Javad
Dastoorpoor, Maryam
Jamshidnezhad, Amir
Cheraghi, Maria
Sheikhtaheri, Abbas
Regional COVID-19 registry in Khuzestan, Iran: A study protocol and lessons learned from a pilot implementation
title Regional COVID-19 registry in Khuzestan, Iran: A study protocol and lessons learned from a pilot implementation
title_full Regional COVID-19 registry in Khuzestan, Iran: A study protocol and lessons learned from a pilot implementation
title_fullStr Regional COVID-19 registry in Khuzestan, Iran: A study protocol and lessons learned from a pilot implementation
title_full_unstemmed Regional COVID-19 registry in Khuzestan, Iran: A study protocol and lessons learned from a pilot implementation
title_short Regional COVID-19 registry in Khuzestan, Iran: A study protocol and lessons learned from a pilot implementation
title_sort regional covid-19 registry in khuzestan, iran: a study protocol and lessons learned from a pilot implementation
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7816600/
https://www.ncbi.nlm.nih.gov/pubmed/33495736
http://dx.doi.org/10.1016/j.imu.2021.100520
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