Welcome to the Neonatal Seizure Registry

What is the Neonatal Seizure Registry?

The Neonatal Seizure Registry (NSR) is an alliance of US centers that have worked together since 2012 to study early onset seizures. The NSR investigators, along with parent and community partners, have worked together to evaluate more than 800 children and families to answer important questions related to the causes and consequences of neonatal acute symptomatic seizures and epilepsy. 

To learn more about our work, visit the Funded Studies tab to explore our ongoing research or browse the Publications section to read findings from our studies. 

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Parent and Family Partnership at NSR

Authentic and sustained family partnership is vital for advancing neonatal and pediatric research. At NSR our collaborative, nonhierarchical model is founded on shared leadership, shared purpose, and mutual learning. We position parents and families as partners and collaborators. Parents and families lived experiences shape the research questions we ask, how we design our studies, how we interpret the findings, and how results are disseminated to improve awareness and care. 

Conceptual framework diagram showing how parent and patient expertise (lived experiences and advocacy) and clinical and research expertise (clinical perspectives, infrastructure, and methodological skills) are bidirectionally connected

 

Visit the Parent Panel and Community Partners page to learn more. 

 

Resources for Parents

Visit the For Parents tab to access information about our ongoing studies, parent-focused resources, participant newsletters, and blog posts.

Interested in supporting our work or have questions? We'd love to hear from you! Call us at (415) 476-3785 or email us at [email protected].