Up to 1% of patients with refractory epilepsy die suddenly every year in an unexplained phenomenon called Sudden Unexpected Death in Epilepsy (SUDEP). In 2008 a joint American Epilepsy Society and Epilepsy Foundation convened Task Force recommended hypothesis-driven, prospective, multicenter research into SUDEP with multi-modal seizure parameters including cardiovascular, respiratory, autonomic and biochemical factors. This approach is vital as SUDEP is most likely a seizure related event. In SUDEP, we hypothesize exaggerated supra-pontine seizure influences produce severe autonomic dysfunction manifested as profound hypotension, fatal arrhythmia or apnea. Genetic predisposition and brainstem serotonergic dysregulation may contribute. However, critical barriers to research exist including 1) an annual SUDEP incidence of 0.5-1% making large multi-center studies necessary and 2) the collection and analysis of very large datasets of multi-modal seizure data (video, electroencephalography (EEG), electrocardiography (EKG), blood pressure, O2 &CO2 measurements, sleep data);traditional visual and statistical analyses of these multiple parameters that vary from second to second are very difficult. To overcome these barriers, a sophisticated bio-informatics system is required to acquire, standardize and analyze such data from a wide range of seizure monitoring systems in different centers. The proposed Prevention and Risk Identification of SUDEP Mortality (PRISM) Project will 1) leverage existing expertise and infrastructure at our Center to create a novel, integrated multi-modal data acquisition and management system called MEDCIS (Multi-modality Epilepsy Data Capture and Integration System). Through MEDCIS, we will aim to collect a large scale, multicenter, prospective cohort of epilepsy patients undergoing seizure monitoring. MEDCIS will prospectively create a surveillance register of SUDEP. We will 2) aim to establish capability for comprehensive comparative studies of SUDEP and near-SUDEP cases vs. cohort survivors to ascertain differences in clinical epilepsy and multi-modal physiological seizure data including EEG, EKG, autonomic, cardiovascular, respiration, sleep, endocrine and evoked potential features in order to characterize and quantify seizure induced brainstem dysfunction. 3) A SUDEP brain bank and genetics database will also be established within MEDCIS adding to an existing, substantial collection of material to investigate genetic influences and serotonergic brain dysfunction. The PRISM Project will form the core of a subsequent SUDEP Center Without Walls and will enable multi-disciplinary collaborations in SUDEP research to succeed. Such an approach is the most likely to produce effective SUDEP prevention strategies.
Sudden Unexpected Death in Epilepsy (SUDEP) is a public health problem that affects ~5000 individuals with epilepsy in the USA every year. How this happens is poorly understood and therefore no targeted prevention strategies exist. The goal of this research is to bring together a wide range of established expertise into a multi-disciplinary, multi-center collaboration and conduct exploratory research using sophisticated computational infrastructure and techniques that will significantly advance SUDEP research. Disclaimer: Please note that the following critiques were prepared by the reviewers prior to the Study Section meeting and are provided in an essentially unedited form. While there is opportunity for the reviewers to update or revise their written evaluation, based upon the group's discussion, there is no guarantee that individual critiques have been updated subsequent to the discussion at the meeting. Therefore, the critiques may not fully reflect the final opinions of th individual reviewers at the close of group discussion or the final majority opinion of the group. Thus the Resume and Summary of Discussion is the final word on what the reviewers actually considered critical at the meeting.
|Chen, Xiaoli; Wang, Rui; Lutsey, Pamela L et al. (2016) Racial/ethnic differences in the associations between obesity measures and severity of sleep-disordered breathing: the Multi-Ethnic Study of Atherosclerosis. Sleep Med 26:46-53|
|Lacuey, Nuria; Zonjy, Bilal; Theerannaew, Wanchat et al. (2016) Left-insular damage, autonomic instability, and sudden unexpected death in epilepsy. Epilepsy Behav 55:170-3|
|Kaiboriboon, Kitti; Malkhachroum, Ayham M; Zrik, Ahmad et al. (2015) Epilepsy surgery in the United States: Analysis of data from the National Association of Epilepsy Centers. Epilepsy Res 116:105-9|
|Koo, Brian B; Sillau, Stefan; Dean 2nd, Dennis A et al. (2015) Periodic limb movements during sleep and prevalent hypertension in the multi-ethnic study of atherosclerosis. Hypertension 65:70-7|
|Chen, Xiaoli; Wang, Rui; Zee, Phyllis et al. (2015) Racial/Ethnic Differences in Sleep Disturbances: The Multi-Ethnic Study of Atherosclerosis (MESA). Sleep 38:877-88|
|Sahoo, Satya S; Jayapandian, Catherine; Garg, Gaurav et al. (2014) Heart beats in the cloud: distributed analysis of electrophysiological 'Big Data' using cloud computing for epilepsy clinical research. J Am Med Inform Assoc 21:263-71|
|Zhang, Guo-Qiang; Cui, Licong; Lhatoo, Samden et al. (2014) MEDCIS: Multi-Modality Epilepsy Data Capture and Integration System. AMIA Annu Symp Proc 2014:1248-57|
|Cui, Licong; Sahoo, Satya S; Lhatoo, Samden D et al. (2014) Complex epilepsy phenotype extraction from narrative clinical discharge summaries. J Biomed Inform 51:272-9|
|Sahoo, Satya S; Lhatoo, Samden D; Gupta, Deepak K et al. (2014) Epilepsy and seizure ontology: towards an epilepsy informatics infrastructure for clinical research and patient care. J Am Med Inform Assoc 21:82-9|
|Grimminger, Tanja; Pernhorst, Katharina; Surges, Rainer et al. (2013) Levetiracetam resistance: Synaptic signatures & corresponding promoter SNPs in epileptic hippocampi. Neurobiol Dis 60:115-25|
Showing the most recent 10 out of 27 publications