Indo-US Collaborative Stroke Registry and Infrastructure Development

描述（由申请人提供）：目前的提案旨在模仿美国现有的NIH资助的中风基础设施，为印度中风领域的资源、工具和数据共享开发基础设施。我们的目标是为印美关系奠定基础。研究合作的比较研究中风的危险因素，结果，未来的遗传和影像学研究，和中风临床试验。在过去的十年中，美国国立卫生研究院已经认识到汇集来自多个中心的先进临床、成像、实验室和遗传数据的重要性，以便解决中风领域的主要问题。NIH的资金帮助建立了几个大型中风数据库，刺激了合作研究。例如中风遗传学网络（SiGN）、中风成像库（STIR）和急性中风转化研究专业项目（SPOTRIAS）。马萨诸塞州总医院（MGH，本提案的美国所在地）一直在向这些登记处和网络提供数据。事实上，该建议的私家侦探和共同调查人员在其发展过程中发挥了关键作用。我们在定义、查询和逻辑检查、数据存储/检索等关键数据库框架问题上积累了经验，并开发了用于中风表型、遗传和成像数据分析以及中风亚型分型的工具。印度也认识到协作数据库的优势。我们的印度合作项目人员来自5个高容量、地理位置不同的中心，他们创建了地方登记并为国家和国际努力提供了数据，例如，喀拉拉邦SreeChitra研究所以医院为基础的卒中登记，以人口为基础的卢迪亚纳卒中登记，以及ICMR和SITS-SEARS登记。目前，这些数据库缺乏多民族数据，并且受到数据定义不同和方法不标准化等问题的限制。我们最近的一项研究（AIIMS, Nizam）比较了MGH与两个印度站点（AIIMS, Nizam）的年轻中风患者，突出了这些缺点和发现新的生物学见解的潜力。我们现在提出一个全面的印度卒中登记，其数据定义和数据字段与现有的NIH登记（例如SiGN）一致。培训一组研究助理和研究员关于数据获取和输入方法是一个关键组成部分，并将使这一初步努力得以持续。用户驱动的基于网络的平台将允许研究团队共享和比较多民族的数据，并加快世界各地中风临床、遗传和成像研究的步伐。

DESCRIPTION (provided by applicant): The current proposal seeks to develop an infrastructure for resource, tool and data sharing in the field of stroke in India, modeled after te existing NIH funded stroke infrastructure in USA. Our goal is to lay the foundation for Indo-U.S. research collaborations for comparative studies on stroke risk factors, outcomes, future genetic and imaging studies, and stroke clinical trials. Over the past decade the U.S. NIH has recognized the importance of pooling advanced clinical, imaging, laboratory and genetic data from multiple centers in order to address major questions in the field of stroke. NIH funding has helped to create several large stroke databases that have stimulated collaborative research. Examples include the Stroke Genetics Network (SiGN), the Stroke Imaging Repository (STIR), and the Specialized Program of Translational Research in Acute Stroke (SPOTRIAS). The Massachusetts General Hospital (MGH, the U.S. site of this proposal), has been contributing data to each of these registries and networks. In fact, the PI and co-investigators on this proposal have played key roles in their development. We have gained experience in critical database framework issues such as definitions, queries and logic checks, data storage/retrieval, and have developed tools for stroke phenotypic, genetic and imaging data analysis, and stroke subtyping. The advantages of collaborative databases have also been recognized in India. Our Indian Co-PIs from 5 high-volume geographically diverse centers have created local registries and contributed data towards national and international efforts, e.g. the hospital-based stroke registry at SreeChitra Institute Kerala, the population- based Ludhiana stroke registry, and the ICMR and SITS-SEARS registries. Currently, these databases lack multi-ethnic data, and are limited by issues such as varying data definitions and non-standardized methodology. These shortcomings, and the potential to uncover new biological insights, were highlighted in our recent study comparing young stroke at MGH versus two Indian sites (AIIMS, Nizam). We now propose a comprehensive Indian stroke registry, with data definitions and data fields consistent with existing NIH registries (e.g. SiGN). Training a group of research associates and fellows on methods of data acquisition and entry is a key component and will allow this initial effort to be sustained. The user-driven web-based platform will allow research teams to share and compare multi-ethnic data, and accelerate the pace of stroke clinical, genetic and imaging research around the world. PUBLIC HEALTH RELEVANCE: Stroke is a leading cause of death and disability and a major socio-economic burden in virtually every country. This Indo-US collaborative proposal seeks to leverage existing U.S. NIH-funded stroke database efforts, to develop a parallel user-driven web-based registry for stroke patients in 5 high-volume centers in India. Ultimately this platform will enable researchers in both countries to share and compare multi-ethnic data, and accelerate the pace of stroke clinical, genetic and imaging research around the world.