Thyroid Cancer and Tumor Collaborative Registry (TCCR).
Thyroid Cancer and Tumor Collaborative Registry (TCCR).
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DOI：
10.4137/cin.s32470
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发表时间：
2016
影响因子：
2
通讯作者：
Sherman S
中科院分区：
文献类型：
--
作者：
Shats O;Goldner W;Feng J;Sherman A;Smith RB;Sherman S
一个多中心的、基于网络的甲状腺癌和肿瘤合作登记处（TCCR，http://tccr.unmc.edu）允许收集和管理甲状腺癌（TC）和甲状腺结节（TN）患者的各种数据。TCCR与开源生物库管理系统OpenSpecimen相结合，以注释从TCCR受试者获得的生物标本。提供了人口统计学、生活方式、体力活动、饮食习惯、家族史、病史和生活质量数据，受试者可将其录入登记研究。诊断、治疗和结局信息由临床人员输入。技术合作与控制中心采用先进的技术和组织做法，如㈠元数据驱动的软件架构（设计）; ㈡数据共享和互操作性的现代标准和最佳做法（标准化）; ㈢敏捷方法（项目管理）; ㈣软件即服务（SaaS）作为软件分发模式（运作）; ㈤联邦原则作为商业模式（治理）。这使我们能够为TC和TN数据收集和管理创建一个安全、可靠、用户友好和自我可持续的系统，该系统与各种最终用户设备兼容，并可轻松适应快速变化的环境。目前，TCCR包含2，261名受试者的数据和28，000多份生物标本的数据。TCCR收集的数据和生物样本用于制定针对TC的诊断，预防，治疗和生存策略。
A multicenter, web-based Thyroid Cancer and Tumor Collaborative Registry (TCCR, http://tccr.unmc.edu) allows for the collection and management of various data on thyroid cancer (TC) and thyroid nodule (TN) patients. The TCCR is coupled with OpenSpecimen, an open-source biobank management system, to annotate biospecimens obtained from the TCCR subjects. The demographic, lifestyle, physical activity, dietary habits, family history, medical history, and quality of life data are provided and may be entered into the registry by subjects. Information on diagnosis, treatment, and outcome is entered by the clinical personnel. The TCCR uses advanced technical and organizational practices, such as (i) metadata-driven software architecture (design); (ii) modern standards and best practices for data sharing and interoperability (standardization); (iii) Agile methodology (project management); (iv) Software as a Service (SaaS) as a software distribution model (operation); and (v) the confederation principle as a business model (governance). This allowed us to create a secure, reliable, user-friendly, and self-sustainable system for TC and TN data collection and management that is compatible with various end-user devices and easily adaptable to a rapidly changing environment. Currently, the TCCR contains data on 2,261 subjects and data on more than 28,000 biospecimens. Data and biological samples collected by the TCCR are used in developing diagnostic, prevention, treatment, and survivorship strategies against TC.