North American SUDEP Registry

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

This dataset from 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 was 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
  • FFPE blocks
2011 - Present
Geographic Coverage
United States
Local Expert
Subject of Study
Subject Domain
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)


Application Required
Author Approval Required
Data and biospecimens may be requested from the NASR team by completing the Data Request Form or by sending a short research proposal to
Access via Data Request Form

Form to request access

Associated Publications
Data Type
Study Type
PubMed Search
View articles which use this dataset