NYU Data Catalog

North American SUDEP Registry

Alternate Titles(s): North American Sudden Unexpected Death in Epilepsy Registry (NASR)
UID: 10407
Description

The North American SUDEP Registry represents an ongoing collaborative effort to collect clinical information, tissue, and DNA to support research on clinical research factors for Sudden Unexpected Death in Epilepsy (SUDEP) and other causes of epilepsy-related deaths.

For enrollment in the registry, at least one of the following criteria must be satisfied:

  • SUDEP within the last five years
  • Witnessed SUDEP
  • Available biospecimens
  • Video electroencephalogram (EEG) of a seizure
  • Completed Electrocardiogram (ECG/EKG) or sleep study
  • Diagnosis of Dravet Syndrome or IDIC15 (DUP15) Syndrome

As of July 2023, the dataset includes the following information:

  • De-identified case histories with patient demographics, medical (including seizure) history and comorbidities, lifestyle assessments, family history, medications, and diagnostic testing results.
    • Adjudicated cases: 388
    • 84 non-SUDEP epilepsy patients
    • 99 living epilepsy patients
  • Digital MRIs for 239 cases (182 SUDEPs)
  • 12-lead ECGs for 92 cases (66 SUDEPs)
  • Digital EEGs for 264 cases (191 SUDEPs)
  • Autopsy reports for 341 cases (278 SUDEPs)
  • Toxicology reports for 289 cases (244 SUDEPs)

Available biospecimens include:

  • Whole blood
  • Whole brain
  • Other brain
  • Slides
  • Formalin-fixed paraffin-embedded (FFPE) blocks
Timeframe
2011 - Present
Geographic Coverage
Canada
Mexico
United States
Local Expert
Daniel Friedman
Orrin Devinsky
Subject of Study
Homo sapiens
Subject Domain
Chronic Disease
Risk Factors
Population Age
Child (2 years - 12 years)
Adolescent (13 years - 18 years)
Adult (19 years - 64 years)
Senior (65 years - 79 years)
Infant (1 month - 23 months)
Keywords
Biological Specimen Banks
Blood
Brain
Chronic Disease
Comorbidities
Death
Epilepsy
Mortality
Myoclonic Epilepsy
North America
Registries
Risk Factors
Seizures
Sudden Death
Sudden Unexpected Death in Epilepsy

Access

Restrictions
Application Required
Author Approval Required
Instructions
Data and biospecimens may be requested from the NASR team by completing the Data Request Form or by sending a short research proposal to info@sudepregistry.org.
Access via Data Request Form

Form to request access

Associated Publications
Verducci C, Hussain F, Donner E, Moseley BD, Buchhalter J, Hesdorffer D, Friedman D, Devinsky O. SUDEP in the North American SUDEP Registry: The full spectrum of epilepsies. Neurology. 2019 Jul 16;93(3):e227-e236.
Verducci C, Friedman D, Donner E, Devinsky O. Genetic generalized and focal epilepsy prevalence in the North American SUDEP Registry. Neurology. 2020 Apr 21;94(16):e1757-e1763.
Leitner DF, Mills JD, Pires G, Faustin A, Drummond E, Kanshin E, Nayak S, Askenazi M, Verducci C, Chen BJ, Janitz M, Anink JJ, Baayen JC, Idema S, van Vliet EA, Devore S, Friedman D, Diehl B, Scott C, Thijs R, Wisniewski T, Ueberheide B, Thom M, Aronica E, Devinsky O. Proteomics and Transcriptomics of the Hippocampus and Cortex in SUDEP and High-Risk SUDEP Patients. Neurology. 2021 May 25;96(21):e2639-e2652. doi: 10.1212/WNL.0000000000011999. Epub 2021 Apr 28.
Leitner DF, Faustin A, Verducci C, Friedman D, William C, Devore S, Wisniewski T, Devinsky O. Neuropathology in the North American sudden unexpected death in epilepsy registry. Brain Commun. 2021 Aug 23;3(3):fcab192. doi: 10.1093/braincomms/fcab192. PMID: 34514397; PMCID: PMC8417454.
Gravitis AC, Sivendiran K, Tufa U, Zukotynski K, Chinvarun Y, et al. (2024) Wavelet phase coherence of ictal scalp EEG-extracted muscle activity (SMA) as a biomarker for sudden unexpected death in epilepsy (SUDEP). PLOS ONE. 2024 Aug 29;19(8):e0298943.
Data Type
Surveys
Registries
Biospecimens
Electrophysiological
Clinical Measures
Genomic
Physiological
Imaging
Interviews
Study Type
Observational
PubMed Search
View articles which use this dataset