Registry for Patients Diagnosed With Emats According to Latest Ilae Guidelines Across Several Academic Epilepsy Centers to Study Outcomes as They Relate to Stormy Phase and Ultimate Seizure and Developmental Outcomes

Overview

About this study

The purpose of this study is to establish a multicenter registry to enroll prospectively diagnosed EMAtS patients who are longitudinally followed for 2 years to:1.) calculate the incidence, median time to onset and duration of SP in EMAtS; 2.) To identify best treatment outcomes and developmental outcomes of SP and 3) to explore the possibility of clinical and EEG biomarkers in identifying which patients will develop medical intractability and evolve to SP.

Participation eligibility

Participant eligibility includes age, gender, type and stage of disease, and previous treatments or health concerns. Guidelines differ from study to study, and identify who can or cannot participate. There is no guarantee that every individual who qualifies and wants to participate in a trial will be enrolled. Contact the study team to discuss study eligibility and potential participation.

Inclusionary Criteria

•   Epilepsy onset between age 6 months and 8 years.

•   Seizure types must include myoclonic-atonic seizures, and may include other generalized seizure types including absence, atonic, generalized tonic-clonic, or myoclonic seizures.

•   EEG findings include generalized 2-6 Hz spike-wave or polyspike-and-wave abnormalities.

•   Normal or mildly delayed development (1 domain) prior to seizure onset.

Exclusionary criteria

•   Epileptic spasms prior to diagnosis.

•   Focal onset seizures.

•   EEG showing persistent focal abnormalities or hypsarrhythmia.

•   Abnormal MRI with causal lesion for epilepsy.

•   Diagnosis of GLUT-1 deficiency syndrome.

Note: Other protocol defined Inclusion/Exclusion Criteria may apply.

Eligibility last updated 5/30/2024. Questions regarding updates should be directed to the study team contact.

Participating Mayo Clinic locations

Study statuses change often. Please contact the study team for the most up-to-date information regarding possible participation.

Mayo Clinic Location Status Contact

Rochester, Minn.

Mayo Clinic principal investigator

Katherine Nickels, M.D.

Contact us for the latest status

Contact information:

William Tauer

(507) 293-2591

Tauer.William@mayo.edu

More information

Publications

Publications are currently not available