Improving data quality in observational research studies: Report of the Cure Glomerulonephropathy (CureGN) network.
Improving data quality in observational research studies: Report of the Cure Glomerulonephropathy (CureGN) network.
复制标题
改善观察性研究的数据质量：治愈肾小球肾病（CureGN）网络报告。
DOI：
10.1016/j.conctc.2021.100749
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发表时间：
2021-06
影响因子：
1.5
通讯作者：
Trachtman H
中科院分区：
文献类型：
--
作者：
Gillespie BW;Laurin LP;Zinsser D;Lafayette R;Marasa M;Wenderfer SE;Vento S;Poulton C;Barisoni L;Zee J;Helmuth M;Lugani F;Kamel M;Hill-Callahan P;Hewitt SM;Mariani LH;Smoyer WE;Greenbaum LA;Gipson DS;Robinson BM;Gharavi AG;Guay-Woodford LM;Trachtman H
高质量的数据对研究项目的完整性至关重要。在进行具有越来越多类型和数量的数据的多中心观察性队列研究时，保持数据质量是具有挑战性的，几乎没有公布的指导方针。治疗肾小球肾炎(CureGN)网络建立了许多质量控制程序，以管理美国、加拿大和欧洲的70个参与地点。这一努力得到了几个委员会的活动的支持和指导，其中包括数据质量、征聘和保留以及中央审查，这些委员会与数据协调中心合作监测这项研究。我们实施了协调员培训和反馈渠道，对有问题或缺失的数据进行数据查询，并为招聘、保留、完成访问、数据输入、记录患者报告的结果、收集、运输和访问生物样本和病理材料以及处理、编目和访问遗传数据和材料制定了业绩衡量标准。我们描述了数据查询和现场报告卡的发展，以及它们在监测和鼓励优秀现场表现方面的应用。在实施这些活动后的4年中，我们展示了数据质量和完整性方面的改进。我们描述了解决收集和编目整个幻灯片图像和其他肾脏病理数据的具体挑战的质量倡议，以及数据质量评估的新方法。本文报告了CureGN在优化数据质量方面的经验，并强调了在多中心观察性研究的研究措施中保持卓越的一般性和特定于研究的数据质量倡议的重要性。
High data quality is of crucial importance to the integrity of research projects. In the conduct of multi-center observational cohort studies with increasing types and quantities of data, maintaining data quality is challenging, with few published guidelines. The Cure Glomerulonephropathy (CureGN) Network has established numerous quality control procedures to manage the 70 participating sites in the United States, Canada, and Europe. This effort is supported and guided by the activities of several committees, including Data Quality, Recruitment and Retention, and Central Review, that work in tandem with the Data Coordinating Center to monitor the study. We have implemented coordinator training and feedback channels, data queries of questionable or missing data, and developed performance metrics for recruitment, retention, visit completion, data entry, recording of patient-reported outcomes, collection, shipping and accessing of biological samples and pathology materials, and processing, cataloging and accessing genetic data and materials. We describe the development of data queries and site Report Cards, and their use in monitoring and encouraging excellence in site performance. We demonstrate improvements in data quality and completeness over 4 years after implementing these activities. We describe quality initiatives addressing specific challenges in collecting and cataloging whole slide images and other kidney pathology data, and novel methods of data quality assessment. This paper reports the CureGN experience in optimizing data quality and underscores the importance of general and study-specific data quality initiatives to maintain excellence in the research measures of a multi-center observational study.
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DOI：
10.1111/j.1600-6143.2010.03039.x
发表时间：
2010-07
期刊：
American journal of transplantation : official journal of the American Society of Transplantation and the American Society of Transplant Surgeons
影响因子：
--
作者：
Gillespie BW;Merion RM;Ortiz-Rios E;Tong L;Shaked A;Brown RS;Ojo AO;Hayashi PH;Berg CL;Abecassis MM;Ashworth AS;Friese CE;Hong JC;Trotter JF;Everhart JE;A2ALL Study Group
通讯作者：
A2ALL Study Group
观察研究设计的数据获取，质量和策展指南（DAQCORD）。
影响因子：
2.6
作者：
Ercole A;Brinck V;George P;Hicks R;Huijben J;Jarrett M;Vassar M;Wilson L;DAQCORD collaborators
通讯作者：
DAQCORD collaborators
影响因子：
3.7
作者：
Duda, Stephany N.;Shepherd, Bryan E.;McGowan, Catherine C.
通讯作者：
McGowan, Catherine C.
影响因子：
5.1
作者：
Stone, EJ;Osganian, SK;Elder, JP
通讯作者：
Elder, JP
影响因子：
4.5
作者：
Giganti, Mark J.;Shepherd, Bryan E.;Duda, Stephany N.
通讯作者：
Duda, Stephany N.