Indo-US Collaborative Stroke Registry and Infrastructure Development

印度-美国合作卒中登记和基础设施开发

• 批准号: 8242941
• 负责人: ANEESH B SINGHAL
• 金额: $ 30.65万
• 依托单位: MASSACHUSETTS GENERAL HOSPITAL
• 依托单位国家: 美国
• 财政年份: 2011
• 资助国家: 美国
• 起止时间: 2011-09-30 至 2014-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8242941
• 关键词: Address; Biological; Blood specimen; Caliber; Cause of Death; Classification; Clinical; Clinical Trials; Collaborations; Commit; Comparative Study; Country; Data; Data Analyses; Data Element; Data Storage and Retrieval; Databases; Developing Countries; Development; Economic Burden; Ensure; Foundations; Funding; Future; General Hospitals; Genetic; Goals; Health Sciences; Hospitals; Image; Income; Inpatients; Institutes; International; Internet; Ischemic Stroke; Laboratories; Location; Logic; Low income; Magnetic Resonance Imaging; Massachusetts; Medical; Methodology; Methods; Modeling; National Institute of Neurological Disorders and Stroke; Online Systems; Outcome; Patients; Phenotype; Play; Postdoctoral Fellow; Registries; Research; Research Infrastructure; Research Personnel; Resources; Risk Factors; Running; Science; Site; Stroke; System; Therapeutic; Training; Training and Infrastructure; Translational Research; United States National Institutes of Health; Vision; acute stroke; base; comparative; data acquisition; data sharing; design; disability; experience; genetic epidemiology; infrastructure development; insight; meetings; population based; programs; repository; socioeconomics; symposium; tool; young adult

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.

描述（由申请人提供）：当前提案旨在开发印度卒中领域的资源、工具和数据共享基础设施，以美国现有NIH资助的卒中基础设施为模型。我们的目标是为印美研究合作奠定基础，以进行卒中风险因素、结局、未来遗传和成像研究以及卒中临床试验的比较研究。在过去的十年中，美国国家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，以解决中风领域的主要问题。美国国立卫生研究院的资金帮助建立了几个大型中风数据库，这些数据库促进了合作研究。例子包括中风遗传学网络（SiGN），中风成像库（STIR）和急性中风转化研究专业计划（SPOTRIAS）。马萨诸塞州综合医院（MGH，本提案的美国研究中心）一直在向这些登记研究和网络提供数据。事实上，该提案的主要研究者和合作研究者在其开发中发挥了关键作用。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分型的工具。印度也认识到合作数据库的优势。我们来自5个高容量地理位置多样化中心的印度Co-PI创建了当地登记系统，并为国家和国际工作贡献了数据，例如SreeChitra研究所喀拉拉邦基于医院的卒中登记系统、基于人群的Ludhiana卒中登记系统以及ICMR和SITS-SEARS登记系统。目前，这些数据库缺乏多民族数据，并受到数据定义不同和方法不标准等问题的限制。这些缺点，以及发现新的生物学见解的潜力，在我们最近的研究中强调了比较MGH与两个印度站点（AIIMS，Nizam）的年轻中风。我们现在提出了一个全面的印度卒中登记研究，其数据定义和数据字段与现有的NIH登记研究（例如，SiGN）一致。对一批研究助理和研究员进行数据获取和输入方法的培训是一个关键组成部分，将使这一初步努力得以持续。这个以用户为导向的网络平台将允许研究团队共享和比较多种族数据，并加快全球中风临床、遗传和成像研究的步伐。 公共卫生相关性：中风是死亡和残疾的主要原因，几乎在每个国家都是主要的社会经济负担。这项印美合作提案旨在利用现有的美国NIH资助的卒中数据库工作，为印度5个高容量中心的卒中患者开发一个并行的用户驱动的基于网络的登记研究。最终，该平台将使两国的研究人员能够共享和比较多种族数据，并加快全球中风临床，遗传和成像研究的步伐。