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.
The main goal of this Informatics and Data Analytics Core, a part of the SUDEP Translational Research Alliance, is to expand and broaden the sharing and utilization of research resources across centers to accelerate the understanding of biological mechanisms responsible for SUDEP, and to develop intervention and prevention measures to reduce SUDEP mortality.
|Cui, Licong; Huang, Yan; Tao, Shiqiang et al. (2016) ODaCCI: Ontology-guided Data Curation for Multisite Clinical Research Data Integration in the NINDS Center for SUDEP Research. AMIA Annu Symp Proc 2016:441-450|
|Lhatoo, Samden; Noebels, Jeffrey; Whittemore, Vicky et al. (2015) Sudden unexpected death in epilepsy: Identifying risk and preventing mortality. Epilepsia 56:1700-6|
|Zhang, Guo-Qiang; Tao, Shiqiang; Xing, Guangming et al. (2015) NHash: Randomized N-Gram Hashing for Distributed Generation of Validatable Unique Study Identifiers in Multicenter Research. JMIR Med Inform 3:e35|