Multi-Center Thyroid Tumor and Cancer Registry

描述（由申请人提供）：甲状腺癌（TC）是最常见的内分泌相关恶性肿瘤。2012年，预计将诊断出56，460例新的TC病例;女性的诊断率是男性的三倍。为了发现TC的可能趋势和原因，需要评估和分析影响TC发生，进展和临床治疗结果的可疑危险因素的重要性。此类研究既需要收集TC患者和高危受试者的全面数据，也需要在全国多个具有TC流行病学、遗传学、生物学、早期检测和患者护理专业知识的中心之间建立密切的信息合作伙伴关系。设计和实施一个先进的生物医学信息学系统，以标准化和有效的方式收集和处理与传统医学相关的数据，对于促进成功的传统医学相关研究至关重要。 该应用程序的主要目标是重新设计由PI开发和维护的甲状腺肿瘤和癌症协作登记（TCCR），以满足数据共享，挖掘和系统互操作性的现代要求和最佳实践，包括由caBIG（R）社区建立的要求。这一目标将通过实现以下具体目标来实现：（i）开发符合国家和国际标准并与癌症数据标准登记和储存库（caDSR）协调一致的TCCR v.2元数据;（ii）将TCCR v.2开发为元数据驱动系统;以及（iii）测试、评估、支持和传播TCCR v.2。 拟议的修改将使TCCR v.2：（i）在语义和语法上与其他相关数据源互操作;（ii）易于替换和修复;（iii）符合数据收集、访问、挖掘、管理和共享的标准。此外，经授权的最终用户和第三方应用程序将能够使用本项目开发的应用程序编程接口，以适合数据挖掘的标准化方式访问收集的数据。与caTissue Suite的集成将显著扩展注册中心的功能，使研究人员能够管理和挖掘TCCR v.2中招募的受试者的生物样本数据。在TC流行病学，遗传学，生物学，早期检测和患者护理方面具有专业知识的多个中心将能够使用TCCR v.2作为队列和人群研究的平台进行合作。TCCR v.2将作为估计TC风险因素、预测生存率， 帮助治疗，评估TC患者的生活质量等。本R03基金申请是作为对NCI发布的FOA PAR-12 - 144的回应提交的，旨在开发新的研究方法和技术。在这个项目中开发的技术和程序将可重新用于处理收集、整合和分析癌症和健康相关数据的其他应用程序。

DESCRIPTION (provided by applicant): Thyroid cancer (TC) is the most common endocrine-related malignancy. In 2012, 56,460 new TC cases are expected to be diagnosed; with women diagnosed three times more often than men. To find possible trends and causes of TC, the significance of suspected risk factors that affect TC development, progression, and outcomes of clinical treatment need to be assessed and analyzed. Such studies require both the collection of the comprehensive data on TC patients and high-risk subjects as well as the establishment of a close information partnership between multiple centers across the country with expertise in TC epidemiology, genetics, biology, early detection and patient care. The design and implementation of an advanced biomedical informatics system for collecting and processing TC-related data in a standardized and efficient way is essential to promote successful TC-related research studies. The main goal of this application is to redesign the Thyroid Tumor and Cancer Collaborative Registry (TCCR), developed and maintained by the PIs, to satisfy modern requirements and best practices for data sharing, mining, and systems interoperability, including those established by the caBIG(R) community. This goal will be achieved by accomplishing the following specific aims: (i) to develop the TCCR v.2 metadata consistent with national and international standards and harmonized with the Cancer Data Standards Registry and Repository (caDSR); (ii) to develop the TCCR v.2 as a metadata- driven system; and (iii) to test, evaluate, support, and disseminate the TCCR v.2. The proposed modifications will make the TCCR v.2: (i) semantically and syntactically interoperable with other related data sources; (ii) easily upgradeable and repairable; and (iii) compliant with standards for data collection, access, mining, management, and sharing. In addition, authorized end-users and third-party applications will be able to use the application programming interfaces (APIs) developed in this project to access collected data in a standardized way suitable for data mining. Integration with the caTissue Suite will significantly expand the registry's capabilities, allowing researchers to manage and mine biospecimen data for subjects enrolled in the TCCR v.2. Multiple centers with expertise in TC epidemiology, genetics, biology, early detection, and patient care will be able to collaborate using the TCCR v.2 as a platform for the cohort and population studies. The TCCR v.2 will serve as a resource for estimating TC risk factors, predicting survivorship, aiding in treatment, evaluating quality of life of the TC patients, etc. This R03 grant applicatio is submitted as a response to FOA PAR-12-144, issued by NCI, which is aimed at developing new research methodology and technology. The technologies and procedures to be developed in this project will be reusable in other applications dealing with collection, integration and analysis of cancer- and health-related data.