Neonatal Seizure Registry, GEnetics of Post-Neonatal Epilepsy

Launched by UNIVERSITY OF CALIFORNIA, SAN FRANCISCO · Apr 29, 2022

Keywords

ClinConnect Summary

The NSR-GENE study is looking at how certain genes might affect the risk of developing epilepsy in children who have experienced neonatal seizures, which are seizures that occur in newborns. This research involves about 300 parent-child pairs and aims to identify whether specific genetic factors, along with clinical tests like EEG (a test that measures brain activity) and MRI (a scan that creates images of the brain), can help predict which babies are at low, medium, or high risk for future epilepsy.

To participate in this study, children must be under 44 weeks of age when their seizures begin and have experienced seizures due to specific causes, such as a lack of oxygen at birth or a stroke. Parents must be able to speak English or Spanish, and at least one biological parent must agree to take part in the study. Participants will help researchers gather important information over time, contributing to a better understanding of neonatal seizures and their long-term effects. If you think your child may be eligible and you're interested in learning more, please reach out to the study team.

Gender

ALL

Eligibility criteria

• Inclusion Criteria:
• • Children \< 44 weeks postmenstrual age at seizure onset
• • Seizures due to an acute provoked cause (including, but not limited to HIE, ischemic stroke, or intracranial hemorrhage)
• • Parent(s) who are English or Spanish literate (with interpreter)
• • Birthdate between 3/1/2023 and 1/1/2011
• • One biological parent willing to participate
• • Enrolled in NSR-II
• • Fulfilling all NSR-II eligibility criteria and evaluated at an NSR center for neonatal seizures or enrolled in NSR-RISE
• Exclusion Criteria:
• • Risk for adverse outcome independent of seizures and underlying brain injury (including but not limited to inborn errors of metabolism, fetal infection, brain malformation)
• • Transient cause for seizures (e.g., hypoglycemia without brain injury, hyponatremia, hypocalcemia)
• • Neonatal-onset epilepsy syndromes
• • Deceased