The Center for SUDEP Research (CSR), Informatics and Data Analytics Core (IDAC)

SUDEP 研究中心 (CSR)、信息学和数据分析核心 (IDAC)

• 批准号: 9330248
• 负责人: Guo-Qiang ZHANG
• 金额: $ 62.48万
• 依托单位: UNIVERSITY OF KENTUCKY
• 依托单位国家: 美国
• 财政年份: 2016
• 资助国家: 美国
• 起止时间: 2016-02-27 至 2019-07-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9330248
• 关键词: Address; Algorithmic Analysis; Algorithms; American; Animals; Award; Big Data; Biochemical Genetics; Biological; Blood Pressure; Brain; Brain Stem; Clinical; Clinical Research; Cloud Computing; Collection; Computers; Consultations; Coupling; Custom; Data; Data Analytics; Data Collection; Data Set; Databases; Development; Electrocardiogram; Electroencephalography; Electrophysiology (science); Enrollment; Epilepsy; Event; Feedback; Formalin; Freezing; Funding; Galvanic Skin Response; Generations; Goals; Imagery; Informatics; Institution; Intervention; Modality; Motion; National Institute of Neurological Disorders and Stroke; Online Systems; Ontology; Oxygen; Patients; Performance; Phenotype; Prevention; Prevention Measures; Process; Registries; Research; Research Design; Research Infrastructure; Research Personnel; Resources; Respiration; Rest; Risk; Role; Scientist; Seizures; Services; Signal Transduction; Sleep; Statistical Data Interpretation; Structure; Surveys; System; Systems Biology; Systems Integration; Technology; Terminology; Translational Research; Visual; Work; base; clinical translation; cohort; computerized tools; crosslink; data management; data mining; data resource; demographics; design; empowered; evidence base; genetic resource; improved; informatics infrastructure; member; mortality; neuropathology; open source; phenotypic data; prospective; public health relevance; quality assurance; satisfaction; signal processing; sudden unexpected death in epilepsy; tool; user-friendly; webinar

 DESCRIPTION (provided by applicant): Project Summary The goal of SUTRA (SUDEP Translational Research Alliance) Center Without Walls is to better understand the brainstem mechanisms responsible for SUDEP and elucidate the role of cortical influences thereon using a data-driven, systems-biology-based approach. This understanding requires a strategy that shares research resources and infrastructure to make good and efficient use of a spectrum of prospectively collected data encompassing clinical, electrophysiological, biochemical, genetic, and neuropathological domains. A critical aspect of SUTRA is the process and infrastructure facilitating the sharing of clinical and research data across centers. In our NINDS-funded center- planning award, Prevention and Risk Identification of SUDEP Mortality (PRISM; 1P20- NS076965), a team of world-class epileptologists, computer scientists, biomedical informaticians and data analytics experts has developed an informatics infrastructure for sharing research data, using the Multi-Modality Epilepsy Data Capture and Integration System (MEDCIS). The main goal of this Informatics and Data Analytics U01 Core (IDAC) is to build on the paradigm-changing progress already achieved through PRISM's MEDICS infrastructure and expand and broaden the sharing and utilization of research resources among SUTRA partners. With access to biospecimen materials and alliances with stakeholder organizations including Dup15q, the North American SUDEP Registry, Courtagen, GW Pharma, and CURE, SUTRA will continuously boost materials and data collection. IDAC will promote and facilitate SUDEP research by expanding an integrated clinical and translation data resource for epilepsy; providing coordinated services and support for SUTRA members; empowering investigator with web-based cohort search interface for data mining and hypothesis generation; data analytics and statistical support for in-depth analyses of multi-modal data collected in the shared and expanding SUTRA Data Repository.

 描述（由申请人提供）：项目摘要 SUTRA（SUDEP 转化研究联盟）无墙中心的目标是更好地了解负责 SUDEP 的脑干机制，并使用数据驱动的系统生物学阐明皮质影响的作用。这种理解需要一种共享研究资源和基础设施的策略，以充分有效地利用一系列前瞻性收集的数据，包括临床、电生理学、生物化学、遗传和神经病理学。 SUTRA 的一个重要方面是促进跨中心共享临床和研究数据的流程和基础设施，在我们的 NINDS 资助的中心规划奖中，SUDEP 死亡率的预防和风险识别（PRISM；1P20- NS076965）中有一个团队。由世界一流的癫痫学家、计算机科学家、生物医学信息学家和数据分析专家组成的团队使用多模态癫痫数据开发了一个用于共享研究数据的信息学基础设施捕获和集成系统 (MEDCIS) 信息学和数据分析 U01 核心 (IDAC) 的主要目标是建立在通过 PRISM 的 MEDICS 基础设施已经取得的范式改变进展的基础上，并扩大和扩大 SUTRA 之间研究资源的共享和利用。通过获得生物样本材料并与 Dup15q、北美 SUDEP 注册中心、Courtagen、GW Pharma 和 CURE 等利益相关者组织结盟，SUTRA 将不断改进材料。 IDAC 将通过扩展癫痫病的综合临床和翻译数据资源来促进和促进 SUDEP 研究；为研究人员提供基于网络的队列搜索界面进行数据挖掘和假设数据分析；以及对在共享和扩展的 SUTRA 数据存储库中收集的多模式数据进行深入分析的统计支持。