SUDEP Research Alliance: Clinical Network Core; Application 2 of 7

SUDEP研究联盟：临床网络核心；

• 批准号: 8934219
• 负责人: ALICA M GOLDMAN
• 金额: $ 16.58万
• 依托单位: BAYLOR COLLEGE OF MEDICINE
• 依托单位国家: 美国
• 财政年份: 2014
• 资助国家: 美国
• 起止时间: 2014-09-30 至 2019-07-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8934219
• 关键词: Adult; Affect; Algorithms; Arrhythmia; Biological; Biological Models; Brain; Cardiac; Child; Childhood; Clinical; Communication; Data; Data Collection; Data Storage and Retrieval; Detection; Diagnosis; Epidemiology; Epilepsy; Evaluation; Face; Functional disorder; Funding; Genetic; Genetic study; Goals; Health; Human; Image; Individual; Investigation; Left; Link; Monitor; National Institute of Neurological Disorders and Stroke; Patients; Phenotype; Physiologic Monitoring; Physiological; Population; Prevention; Procedures; Recommendation; Recording of previous events; Research; Research Infrastructure; Research Personnel; Resources; Respiratory physiology; Risk; Risk Factors; Seizures; Specimen; Structure; Syndrome; Translating; Translational Research; base; clinical practice; data exchange; data integration; design; experience; high risk; human data; morphometry; mortality; patient oriented; patient population; premature; public education; respiratory; sample collection

 DESCRIPTION (provided by applicant): The SRA collaborative network brings together individually unique projects linked by a common goal of rapid translation of research discoveries into clinical practice of SUDEP diagnosis, risk detection and prevention. Until now, there has not been an organized clinical network specifically focused on individuals at high risk for SUDEP. Moreover, there is a lack of unified clinical monitoring algorithms that will stratify SUDEP risk i patient population, allow in-depth correlative analysis with brain morphometric studies and genetic investigations, and inform model systems of premature epilepsy mortality. We therefore propose a Clinical Network Core (SRA-CNC) that consists of four principal components: (1) a Pediatric Clinical Network (PCN) aimed at recruitment, physiological monitoring, and sample collection in children affected by Dravet syndrome, (2) an Adult Clinical Network (ACN) focused on high SUDEP risk adult patients based on the combined phenotype of epilepsy, cardiac arrhythmias and respiratory dysfunction, (3) Analysis Center entails physiological, morphometric, and epidemiological evaluations of the human data, and (4) Data integration and storage. The SRA-CNC will perform four main functions; (1) It will establish infrastructure, logistical and regulatory support and implement standard operating procedures for case ascertainment, scope and mode of physiological monitoring and data collection, and procurement of biological specimens; (2) it will provide problem focused expert analysis of the (i) clinical and epidemiological data, (ii) ictal, cardiac, and respiratory physiology, and (iii) imaging based morphometry; (3) It will optimize resource utilization and facilitate data exchange, analysis, and communication among participating centers; and (4) SRA-CNC will translate investigational procedures into clinical practice in the form of public education and evidence driven recommendations. The Clinical Network Core is an essential component of the proposed SUDEP Center Without Wall piloted by the investigators of SUDEP Research Alliance as it will inform and facilitate current and future research translational projects in humans and i the individualized model systems.