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印度侵袭性真菌感染临床注册数字数据库的开发:增进流行病学认识与患者护理水平

The Development of a Clinical Registry Digital Database on Invasive Fungal Infections in India: Advancing Epidemiological Understanding and Patient Care.

作者信息

Kaur Harleen, Singh Kh Jitenkumar, Sharma Saurabh, Das Madhuchhanda, Albert Venencia, Ojha Anup Kumar, Singh Gagandeep, Hallur Vinaykumar, Savio Jayanthi, Pamidimukkala Umabala, Karuna Tadepalli, Nath Reema, Xess Immaculata, Gupta Prashant, Shetty Anjali

机构信息

ICMR-National Institute of Medical Statistics (ICMR-NIMS), New Delhi 110029, India.

Indian Council of Medical Research (ICMR), New Delhi 110029, India.

出版信息

J Fungi (Basel). 2024 Jan 5;10(1):42. doi: 10.3390/jof10010042.

Abstract

A well-structured digital database is essential for any national priority project as it can provide real-time data analysis and facilitate quick decision making. In recent times, particularly after the COVID-19 pandemic, invasive fungal infections (IFIs) have emerged as a significant public health challenge in India, affecting vulnerable population, including immunocompromised individuals. The lack of comprehensive and well-structured data on IFIs has hindered efforts to understand their true burden and optimize patient care. To address this critical knowledge gap, the ICMR has undertaken a Pan-India pioneer initiative to develop a network of Advanced Mycology Diagnostic research centres in different geographical zones of the country (ICMR-MycoNet). Under the aegis of this project, a clinical registry on IFIs in the ICUs is initiated. This process paper presents a detailed account of the steps involved in the establishment of a web-based data entering and monitoring platform to capture data electronically, ensuring robust and secure data collection and management. This system not only allows participating ICMR-MycoNet centres to enter patient information directly into the database using standardized Case Report Form (CRF) but also includes data validation checks to ensure the accuracy and completeness of entered data. It is complemented by a real-time, web-based, and adaptable data visualization platform. This registry aims to provide crucial epidemiological insights, promote evidence-based hospital infection control programs, and ultimately improve patient outcomes in the face of this formidable healthcare challenge.

摘要

一个结构良好的数字数据库对于任何国家重点项目都至关重要,因为它可以提供实时数据分析并促进快速决策。近年来,特别是在新冠疫情之后,侵袭性真菌感染(IFI)已成为印度一项重大的公共卫生挑战,影响包括免疫功能低下个体在内的弱势群体。缺乏关于IFI的全面且结构良好的数据阻碍了人们了解其真实负担并优化患者护理的努力。为了填补这一关键的知识空白,印度医学研究理事会(ICMR)开展了一项全印度的先锋倡议,在该国不同地理区域建立一个高级真菌学诊断研究中心网络(ICMR - MycoNet)。在该项目的支持下,启动了重症监护病房(ICU)中IFI的临床登记工作。本流程文件详细介绍了建立基于网络的数据录入和监测平台以电子方式收集数据所涉及的步骤,确保数据收集和管理的稳健性与安全性。该系统不仅允许参与ICMR - MycoNet的中心使用标准化病例报告表(CRF)将患者信息直接录入数据库,还包括数据验证检查以确保录入数据的准确性和完整性。它由一个实时、基于网络且可适应的数据可视化平台作为补充。该登记旨在提供关键的流行病学见解,推动基于证据的医院感染控制项目,并最终在面对这一严峻的医疗挑战时改善患者预后。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/6f85/10817322/d13628b9cbc9/jof-10-00042-g001.jpg

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