SUDEP Research Alliance: Clinical Network Core
This SRA collaborative network brings together individually unique projects linked by a common goal of rapid translation of research discoveries into Sudden Unexpected Death in EPilepsy (SUDEP) diagnosis, risk detection and prevention. The project seeks to impose unified clinical monitoring algorithms that will stratify SUDEP risk in the patient population, allow in-depth correlative analysis with brain morphometric studies and genetic investigations, and inform model systems of premature epilepsy mortality. The Clinical Network Core (SRA-CNC) 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 in the individualized model systems. Dr. Anderson’s involvement via a subcontract with the parent institution supports collection of high resolution MRI and clinical neuropathologic diagnostics and banking of postmortem brains from individuals who died of SUDEP.