全球-本地临床注册登记：起搏器注册登记设计与实施——方法学与案例研究

数据集获取（Figshare）

• 源站标题：Glocal Clinical Registries: Pacemaker Registry Design and Implementation for Global and Local Integration – Methodology and Case Study
• DOI：10.1371/journal.pone.0071090
• 发布日期：2013-07-25
• 文件数：4 个
• 文件总体积：2.29 MB
• 源站页面：https://plos.figshare.com/articles/dataset/_Glocal_Clinical_Registries_Pacemaker_Registry_Design_and_Implementation_for_Global_and_Local_Integration_8211_Methodology_and_Case_Study_/755145

命令行下载

curl -L -o "Report_S1.html" "https://ndownloader.figshare.com/files/1131102"
curl -L -o "Table_S1.docx" "https://ndownloader.figshare.com/files/1131103"
curl -L -o "Table_S2.docx" "https://ndownloader.figshare.com/files/1131105"
curl -L -o "Table_S3.docx" "https://ndownloader.figshare.com/files/1131106"

文件清单

• Report_S1.html（2.22 MB）
• Table_S1.docx（23.41 KB）
• Table_S2.docx（21.85 KB）
• Table_S3.docx（27.09 KB）

文件总体积 2.29 MB（源站 API 实测）。

数据说明

Background
The ability to apply standard and interoperable solutions for implementing and managing medical registries as well as aggregate, reproduce, and access data sets from legacy formats and platforms to advanced standard formats and operating systems are crucial for both clinical healthcare and biomedical research settings.
Purpose
Our study describes a reproducible, highly scalable, standard framework for a device registry implementation addressing both local data quality components and global linking problems.
Methods and Results
We developed a device registry framework involving the following steps: (1) Data standards definition and representation of the research workflow, (2) Development of electronic case report forms using REDCap (Research Electronic Data Capture), (3) Data collection according to the clinical research workflow and, (4) Data augmentation by enriching the registry database with local electronic health records, governmental database and linked open data collections, (5) Data quality control and (6) Data dissemination through the registry Web site. Our registry adopted all applicable standardized data elements proposed by American College Cardiology / American Heart Association Clinical Data Standards, as well as variables derived from cardiac devices randomized trials and Clinical Data Interchange Standards Consortium. Local interoperability was performed between REDCap and data derived from Electronic Health Record system. The original data set was also augmented by incorporating the reimbursed values paid by the Brazilian government during a hospitalization for pacemaker implantation. By linking our registry to the open data collection repository Linked Clinical Trials (LinkedCT) we found 130 clinical trials which are potentially correlated with our pacemaker registry.
Conclusion
This study demonstrates how standard and reproducible solutions can be applied in the implementation of medical registries to constitute a re-usable framework. Such approach has the potential to facilitate data integration between healthcare and research settings, also being a useful framework to be used in other biomedical registries.

许可

CC BY 4.0

引用

学术使用请引用 DOI 10.1371/journal.pone.0071090（source: https://plos.figshare.com/articles/dataset/_Glocal_Clinical_Registries_Pacemaker_Registry_Design_and_Implementation_for_Global_and_Local_Integration_8211_Methodology_and_Case_Study_/755145）。