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开发众包临床注册研究。

Developing Crowdsourced Clinical Registry Studies.

机构信息

Carolynn Thomas Jones is clinical professor and director of the Master of Clinical Research Program at The Ohio State University College of Nursing in Columbus. Jeremy Walker is an assistant professor at the University of Alabama Birmingham School of Medicine, where Rachel L. McMullen is a clinical trials specialist and Peter G. Pappas is a professor of medicine. Contact author: Carolynn Thomas Jones,

出版信息

Am J Nurs. 2024 Apr 1;124(4):36-41. doi: 10.1097/01.NAJ.0001010572.96486.87. Epub 2024 Mar 21.

DOI:10.1097/01.NAJ.0001010572.96486.87
PMID:38511708
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11146667/
Abstract

Crowdsourced registries have been used to quickly gather information, especially during emerging public health concerns. Registries that began during the COVID-19 pandemic were used to rapidly answer key questions on coinfections, experimental treatments, and morbidity and mortality outcomes. Registries are also used more frequently to support clinical trials and track long-term outcomes in patient populations. This article reviews registry methodology, including the collection of data from crowdsourcing and real-world sources, that can be applied to nurse researcher and clinical research nurse skill sets. The authors illustrate a recently reported crowdsourced COVID-19 and cryptococcal disease registry that followed project management strategies and the Agency for Healthcare Research and Quality registry guidelines for planning, execution, and analysis of registries and other research methods.

摘要

众包注册已被用于快速收集信息,尤其是在突发公共卫生事件期间。在 COVID-19 大流行期间建立的注册机构被用于快速回答关于合并感染、实验性治疗以及发病率和死亡率结果的关键问题。注册机构也越来越多地用于支持临床试验并跟踪患者人群的长期结果。本文回顾了注册方法,包括从众包和真实来源收集数据,这些方法可应用于护士研究人员和临床研究护士的技能组合。作者举例说明了最近报告的一个众包 COVID-19 和隐球菌病注册机构,该机构遵循项目管理策略以及美国医疗保健研究和质量局的注册机构指南,用于规划、执行和分析注册机构和其他研究方法。

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本文引用的文献

1
Description of Cryptococcosis Following SARS-CoV-2 Infection: A Disease Survey Through the Mycosis Study Group Education and Research Consortium (MSG-19).SARS-CoV-2 感染后继发隐球菌病的描述:通过真菌病研究组教育和研究联盟(MSG-19)进行的疾病调查。
Clin Infect Dis. 2024 Feb 17;78(2):371-377. doi: 10.1093/cid/ciad551.
2
COVID-19-associated Cryptococcus infection (CACI): a review of literature and clinical pearls.COVID-19 相关隐球菌感染(CACI):文献回顾与临床要点。
Infection. 2022 Aug;50(4):1007-1012. doi: 10.1007/s15010-022-01805-y. Epub 2022 Mar 24.
3
Coinfections with Bacteria, Fungi, and Respiratory Viruses in Patients with SARS-CoV-2: A Systematic Review and Meta-Analysis.新型冠状病毒肺炎患者合并细菌、真菌及呼吸道病毒感染:一项系统评价与Meta分析
Pathogens. 2021 Jun 25;10(7):809. doi: 10.3390/pathogens10070809.
4
COVID-19 and Solid Organ Transplantation: A Review Article.新型冠状病毒肺炎与实体器官移植:一篇综述文章。
Transplantation. 2021 Jan 1;105(1):37-55. doi: 10.1097/TP.0000000000003523.
5
Crowdsourcing a crisis response for COVID-19 in oncology.众包应对肿瘤学 COVID-19 危机。
Nat Cancer. 2020;1(5):473-476. doi: 10.1038/s43018-020-0065-z. Epub 2020 Apr 21.
6
The American Academy of Dermatology COVID-19 registry: Crowdsourcing dermatology in the age of COVID-19.美国皮肤科协会COVID-19登记处:COVID-19时代的皮肤科众包
J Am Acad Dermatol. 2020 Aug;83(2):509-510. doi: 10.1016/j.jaad.2020.04.045. Epub 2020 Apr 17.
7
The COVID-19 Global Rheumatology Alliance: collecting data in a pandemic.COVID-19 全球风湿病联盟:大流行期间的数据收集。
Nat Rev Rheumatol. 2020 Jun;16(6):293-294. doi: 10.1038/s41584-020-0418-0.
8
The application of crowdsourcing approaches to cancer research: a systematic review.众包方法在癌症研究中的应用:一项系统综述。
Cancer Med. 2017 Nov;6(11):2595-2605. doi: 10.1002/cam4.1165. Epub 2017 Sep 29.