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在伊朗国家多发性硬化症登记系统中实施2019冠状病毒病扩大登记方案。

Implementing coronavirus disease 2019 scale-up registry protocol in national multiple sclerosis registry system of Iran.

作者信息

Eskandarieh Sharareh, Sahraian Mohammad Ali, Moghadasi Abdorreza Naser

机构信息

Multiple Sclerosis Research Center, Neuroscience Institute, Tehran University of Medical Sciences, Tehran, Iran.

出版信息

Curr J Neurol. 2021 Oct 7;20(4):241-245. doi: 10.18502/cjn.v20i4.8351.

Abstract

The national multiple sclerosis (MS) registry is aimed at monitoring and improving quality of care and providing feedback to improve health outcomes by systematic recording of data. In 2018, the nationwide MS registry of Iran (NMSRI) was initiated for collecting epidemiological data and information on health care provision for patients with MS. The aim of the current study was to introduce the role of implementing coronavirus disease 2019 (COVID-19) scale-up registry protocol in NMSRI and arrange the national MS generality with information obtained during the COVID-19 pandemic. The NMSRI group set up a program with crucial elements to collect the data of patients with MS who developed COVID-19. All MS cases with confirmed diagnosis of COVID-19 were enrolled in this study. New elements were considered to be added into the dataset, including demographic characteristics, definite diagnosis of COVID-19 and its symptoms, history of comorbidities, history of medications and hospitalization, changes in magnetic resonance imaging (MRI), and infection outcomes. The COVID-19 data collection program was designed in NMSRI to collect data of MS cases with COVID-19 infection. The data collection protocol was explained to neurologists through an online training workshop. To the date of the study, 21 centers from 17 provinces of Iran were involved in the COVID-19 databases promoting NMSRI and 612 participants were registered successfully. We extended an agreement on data collection and developed it in NMSRI with various contributors to discover a critical need for COVID-19 awareness and monitor clinical training in MS.

摘要

国家多发性硬化症(MS)登记处旨在通过系统记录数据来监测和提高护理质量,并提供反馈以改善健康结果。2018年,伊朗启动了全国性的MS登记处(NMSRI),以收集MS患者的流行病学数据和医疗保健信息。本研究的目的是介绍在NMSRI中实施2019冠状病毒病(COVID-19)扩大登记协议的作用,并根据COVID-19大流行期间获得的信息整理全国MS概况。NMSRI小组设立了一个包含关键要素的项目,以收集感染COVID-19的MS患者的数据。所有确诊为COVID-19的MS病例均纳入本研究。考虑在数据集中添加新的要素,包括人口统计学特征、COVID-19的确切诊断及其症状、合并症病史、用药和住院史、磁共振成像(MRI)变化以及感染结果。NMSRI设计了COVID-19数据收集项目,以收集感染COVID-19的MS病例的数据。通过在线培训研讨会向神经科医生解释了数据收集方案。截至研究日期,伊朗17个省的21个中心参与了促进NMSRI的COVID-19数据库,成功登记了612名参与者。我们就数据收集达成了一项协议,并在NMSRI与各方贡献者共同完善该协议,以发现对COVID-19认知的迫切需求并监测MS的临床培训情况。

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