Department of Biomedical Informatics, University of Pittsburgh School of Medicine, Pittsburgh, Pennsylvania, USA.
Medical Scientist Training Program, University of Pittsburgh-Carnegie Mellon University, Pittsburgh, Pennsylvania, USA.
J Am Med Inform Assoc. 2023 Sep 25;30(10):1634-1644. doi: 10.1093/jamia/ocad132.
Rare disease research requires data sharing networks to power translational studies. We describe novel use of Research Electronic Data Capture (REDCap), a web application for managing clinical data, by the National Mesothelioma Virtual Bank, a federated biospecimen, and data sharing network.
National Mesothelioma Virtual Bank (NMVB) uses REDCap to integrate honest broker activities, enabling biospecimen and associated clinical data provisioning to investigators. A Web Portal Query tool was developed to source and visualize REDCap data in interactive, faceted search, enabling cohort discovery by public users. An AWS Lambda function behind an API calculates the counts visually presented, while protecting record level data. The user-friendly interface, quick responsiveness, automatic generation from REDCap, and flexibility to new data, was engineered to sustain the NMVB research community.
NMVB implementations enabled a network of 8 research institutions with over 2000 mesothelioma cases, including clinical annotations and biospecimens, and public users' cohort discovery and summary statistics. NMVB usage and impact is demonstrated by high website visits (>150 unique queries per month), resource use requests (>50 letter of interests), and citations (>900) to papers published using NMVB resources.
NMVB's REDCap implementation and query tool is a framework for implementing federated and integrated rare disease biobanks and registries. Advantages of this framework include being low-cost, modular, scalable, and efficient. Future advances to NVMB's implementations will include incorporation of -omics data and development of downstream analysis tools to advance mesothelioma and rare disease research.
NVMB presents a framework for integrating biobanks and patient registries to enable translational research for rare diseases.
罕见病研究需要数据共享网络来支持转化研究。我们描述了国家间胸膜间皮瘤虚拟银行（NMVB）对 Research Electronic Data Capture（REDCap）的新颖应用，REDCap 是一种用于管理临床数据的网络应用，它是一个联邦生物样本库和数据共享网络。
国家间胸膜间皮瘤虚拟银行（NMVB）使用 REDCap 集成诚实经纪人活动，使生物样本和相关临床数据能够提供给研究人员。开发了一个 Web 门户查询工具，用于通过公共用户的交互式、分面搜索来获取和可视化 REDCap 数据，从而发现队列。一个在 API 后面的 AWS Lambda 函数计算可视呈现的计数，同时保护记录级数据。用户友好的界面、快速响应、从 REDCap 自动生成以及对新数据的灵活性，旨在维持 NMVB 研究社区。
NMVB 的实施使 8 个研究机构的网络能够提供 2000 多个间皮瘤病例，包括临床注释和生物样本，以及公共用户的队列发现和汇总统计。NMVB 的使用和影响通过高网站访问量（每月超过 150 个独特查询）、资源使用请求（超过 50 封意向书）和引用（超过 900 篇使用 NMVB 资源发表的论文）来证明。
NMVB 的 REDCap 实现和查询工具是实现联邦和集成罕见病生物库和登记处的框架。该框架的优点包括低成本、模块化、可扩展性和高效性。NMVB 实施的未来进展将包括纳入 -omics 数据和开发下游分析工具，以推进间皮瘤和罕见病研究。
NMVB 为整合生物库和患者登记处提供了一个框架，以支持罕见病的转化研究。
