Multi-Center Thyroid Tumor and Cancer Registry

简介（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意义。这些研究既需要收集TC患者和高危受试者的全面数据，也需要全国多个中心在TC流行病学、遗传学、生物学、早期检测和患者护理等方面建立密切的信息合作伙伴关系。设计和实施先进的生物医学信息系统，以标准化和高效的方式收集和处理与tc相关的数据，对于促进成功的tc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注册表（TCCR），以满足数据共享、挖掘和系统互操作性的现代需求和最佳实践，包括由caBIG(R)社区建立的需求和最佳实践。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注册和存储库（caDSR）协调一致的TCCR v.2元数据；（ii）将TCCR v.2发展为元数据驱动系统；（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可互操作；（ii）易于升级和维修；（iii）符合数据收集、访问、挖掘、管理和共享的标准。此外，授权的最终用户和第三方应用程序将能够使用该项目开发的应用程序编程接口（api），以适合数据挖掘的标准化方式访问收集的数据。与caTissue Suite的集成将大大扩展注册中心的功能，使研究人员能够管理和挖掘TCCR v.2中登记的受试者的生物标本数据。拥有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将作为评估TC风险因素、预测生存率、

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.