Perspective on the Development of a Large-Scale Clinical Data Repository for Pediatric Hearing Research.

Perspective on the Development of a Large-Scale Clinical Data Repository for Pediatric Hearing Research.
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儿科听力研究大型临床数据存储库的开发前景。

DOI:
10.1097/aud.0000000000000779
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发表时间:
2020
期刊:
影响因子:
3.7
通讯作者:
Crenshaw3rd,EBryan
Crenshaw3rd,EBryan
中科院分区:
医学1区
文献类型:
--
作者:
Pennington,JeffreyW;Ruth,Byron;Miller,JeffreyM;Peterson,Joy;Xu,Baichen;Masino,AaronJ;Krantz,Ian;Manganella,Juliana;Gomes,Tamar;Stiles,Derek;Kenna,Margaret;Hood,LindaJ;Germiller,John;Crenshaw3rd,EBryan

文献摘要

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将“大数据”用于儿科听力研究需要在数据收集和研究方法方面采取新的方法。电子健康记录系统的广泛部署在大量听力学和医疗数据的二次利用方面创造了新的机遇和相应的挑战。机会包括具有成本效益的假设生成、针对罕见情况的快速队列扩展,以及基于数千至数万样本大小的观察性研究。挑战包括寻找和组建适当技能的团队、访问数据、数据质量评估,以及与大数据新手研究社区的接触。作者分享了他们的经验和对建立和验证儿科听力研究数据库所需工作的看法,该数据库整合了来自三个主要学术医疗中心的电子健康记录系统的超过18.5万名患者的临床数据。
The use of “big data” for pediatric hearing research requires new approaches to both data collection and research methods. The widespread deployment of electronic health record systems creates new opportunities and corresponding challenges in the secondary use of large volumes of audiological and medical data. Opportunities include cost-effective hypothesis generation, rapid cohort expansion for rare conditions, and observational studies based on sample sizes in the thousands to tens of thousands. Challenges include finding and forming appropriately skilled teams, access to data, data quality assessment, and engagement with a research community new to big data. The authors share their experience and perspective on the work required to build and validate a pediatric hearing research database that integrates clinical data for over 185,000 patients from the electronic health record systems of three major academic medical centers.