NATIONAL REGISTRY OF GENETICALLY TRIGGERED THORACIC AORTIC ANEURYSMS

这个子项目是利用资源的许多研究子项目之一。 由NIH/NCRR资助的中心拨款提供。对子项目的主要支持 子项目的首席调查员可能是由其他来源提供的， 包括美国国立卫生研究院的其他来源。为子项目列出的总成本可能 表示该子项目使用的中心基础设施的估计数量， 不是由NCRR赠款提供给次级项目或次级项目工作人员的直接资金。 GenTAC的总体目标是建立遗传导致的胸主动脉瘤和相关疾病患者的登记，并收集相关的医学数据以及血液和组织样本。该登记处将建立生物谱系清单和生物信息学基础设施，使研究能够确定最佳医疗实践，以推进遗传性胸主动脉瘤和其他心血管并发症的临床管理。为了实现这些目标，注册中心将：1)开发标准方法来收集数据和样本，这些数据和样本将用于研究，以确定有主动脉破裂和夹层以及其他心血管并发症发展风险的患者的特征。2)记录接受手术修复动脉瘤的患者的特征和他们的临床结果3)处理组织和血液样本4)分析收集的数据5)为注册调查人员和外部研究人员提供访问这些资源的途径，他们有兴趣促进对遗传性主动脉瘤和受影响患者的管理的基本了解6)出版和传播结果。

This subproject is one of many research subprojects utilizing the resources provided by a Center grant funded by NIH/NCRR. Primary support for the subproject and the subproject's principal investigator may have been provided by other sources, including other NIH sources. The Total Cost listed for the subproject likely represents the estimated amount of Center infrastructure utilized by the subproject, not direct funding provided by the NCRR grant to the subproject or subproject staff. The overall objective of GenTAC is to establish a registry of patients with genetically induced thoracic aortic aneurysms and related conditions, and collect associated medical data, as well as blood and tissue samples. The registry will establish a biospecimen inventory and bioinformatics infrastructure that will enable research to determine best medical practices to advance the clinical management of genetic thoracic aortic aneurysms, and other cardiovascular complications. To achieve these goals the registry will: 1) Develop standard methods to collect data and specimens which will be used for research to characterize patients at risk for aortic rupture and dissection, and development of other cardiovascular complications. 2) Record the characteristics of patients undergoing surgical repair of aneurysms and their clinical outcomes 3) Process tissue and blood specimens 4) Analyze data collected 5) Provide access to these resources to Registry investigators and outside researchers who are interested in advancing the fundamental understanding of genetic aortic aneurysms and management of afflicted patients 6) Publish and disseminate results.