Research Data Resource
InSSURR: A Global, Federated Resource for Epilepsy and SUDEP Research
InSSURR is an NIH funded collaboration between the University Hospital of Lyon, University of Lausanne, and the University of Texas Health Sciences Center at Houston (UTHealth), that harmonizes multimodality epilepsy datasets (EEG, ECG, respiration, sleep, MRI) across international cohorts to power biomarker discovery, artificial intelligence-ready research datasets, and thus rapid-to-bedside mortality prevention strategies. It's data resource combines data from the Center for SUDEP Research (CSR, USA and UK), UTHealth's prospective epilepsy research database, and REPO2MSE (France and Switzerland) studies, which together comprise the largest prospectively collected multimodality datasets for Epilepsy and SUDEP research. (NIH/NINDS R24NS143946)
4,286+
Participants
across foundational resources
4,922+
Epilepsy Monitoring Unit Studies
multi-day, multi-modal
44,000+
Recorded Seizures
research-grade annotations
63
Prospective SUDEP
with matched controls
Figures reflect initial integration targets from CSR, REPO2MSE, and UTHealth cohorts.
Why InSSURR?
SUDEP is a leading cause of mortality in epilepsy, yet mechanisms and targeted interventions remain elusive. InSSURR addresses the data scarcity barrier by integrating international, prospectively collected datasets into a FAIR (Findable, Accessible, Interoperable, and Reusable), research-ready resource.
Significance
A centralized yet federated approach enables sufficiently powered analyses of multi-day EEG, ECG, breathing, sleep, and imaging signals—accelerating discovery of risk markers such as peri-ictal apnea, post-convulsive apnea, PGES, and arrhythmias.
Data Ecosystem
Built on ontology-driven harmonization (EpSO, NINDS CDEs) with tiered, policy-compliant access and secure cloud hosting across partners.
What is CSR?
CSR WebsiteThe Center for SUDEP Research (CSR) is a Center Without Walls for Collaborative Research in the Epilepsies previously funded by the National Institute for Neurological Disorders and Stroke (NINDS). The CSR data collection phase was a seven-year Center Without Walls consortium initiative across 14 institutions in the US and Europe (U01-NS09040, U01-NS090407). It developed an ontology-driven data capture and curation platform called Multimodality Epilepsy Data Capture and Integration System (MEDCIS; U01NS090408) to prospectively collect ~2,700 highly granular, long term (multi-day), multimodality data in PWE for SUDEP research. CSR SUDEP data has provided invaluable insights into pathogenetic mechanisms and biomarkers. Using CSR data, investigators identified several putative SUDEP biomarkers that include prolonged ictal central apnea, post-convulsive central apnea, reduced hypercapnic ventilatory responses to CO2 and post-ictal arrhythmias. Additionally, MRI and neuropathological data led to identification of specific patterns of brain damage in PWE that enable pre-mortem identification of risk. However, many questions on pathogenesis and targeted intervention strategies remain, and are only addressable by sufficiently powered studies. InSSURR is a means to those ends.
What is REPO2MSE?
The Réseau national d’Etude des facteurs prédictifs et de la Prévention des Morts Soudaines inattendues dans les Epilepsies partielles pharmacorésistantes (REPO2MSE) study, previously funded by the French Ministry of Health, has collected a similar prospective data resource of 1,074 multimodality datasets with finely phenotyped datasets of breathing and semiology related biomarkers. REPO2MSE is the largest prospective SUDEP data resource after the CSR.
Data Access
Access Tiers
- Summary data (counts, distributions) with registration and citation agreement.
- Individual-level data with DAC approval, DUA, and IRB documentation.
Security & Privacy
HTTPS, modern encryption, rigorous de-identification, provenance tracking, and secure cloud hosting at UTHealth and partners.
Team & Governance
Led by internationally recognized SUDEP researchers and data scientists; guided by a Data Advisory Committee and an External Advisory Committee.
2026
Launch Epi-Arch with federated CSR, REPO2MSE, and UTHealth datasets (Q2).
Roll out Epi-Port for ingestion, cohort builder, and visual analytics (Q4)
Roll out Epi-Port for ingestion, cohort builder, and visual analytics (Q4)
2027
Expand datasets and enable AI ready tooling (Epi-Tools)
2028
Transition toward a comprehensive epilepsy data resource (U24) with long-term sustainability
Contact & Request Data Access
Ready to access our data? Choose the appropriate request form below.
Have a question? Please use our contact page.
Administrative
Requests are reviewed by the Data Advisory Committee. NIH/EU-funded proposals generally receive full access after approval; limited datasets may be provided for pilots.