Multicenter Neonatal Seizure Registry (NSR)

March 4, 2023

The Pediatric Epilepsy Research Foundation® spotlights the Neonatal Seizure Registry, co-led by Dr. Hannah Glass and Dr. Renée Shellhaas. The Neonatal Seizure Registry was created in 2014 with support from a PERF^® infrastructure grant. The initial study enrolled more than 600 consecutive newborns with seizures at 7 tertiary/quaternary US Pediatric Hospitals. Results from this work included the important descriptions of the etiologies and treatments of neonates with seizures in the US as well as the first description of the frequency of genetic etiologies of neonatal epilepsies.

This exciting body of work highlighted variability in the duration of treatment for neonates with acute provoked seizures. The best predictor of early medication discontinuation was the study site. This important finding led the Neonatal Seizure Registry to compete successfully for a $2.8M contract from the Patient Centered Research Outcomes Institute (PCORI) for an observational comparative effectiveness study of treatment duration. Results of that study will change clinical practice: stopping antiseizure medication before hospital discharge does not increase the risk for epilepsy, nor does it change the change of developmental disability, but it is associated with better parent well-being. This work led to a recommendation in the latest International League Against Epilepsy Guideline to routinely stop medicines before hospital discharge for neonates with acute provoked seizures.

With a second PERF^® infrastructure grant, Drs. Glass and Shellhaas led the Neonatal Seizure Registry to develop a predictive model of the risk for infantile spasms after acute provoked neonatal seizures. This work was done in collaboration with another PERF™ grantee – Dr. Zachary Grinspan. Results of this collaboration are both clinically applicable and also provide important preliminary data for three additional, successful NIH R01 applications. The Neonatal Seizure Registry investigators have been awarded two R01 grants to study school aged outcomes after acute neonatal seizures and the genetic predisposition to post-neonatal epilepsies. Dr. Grinspan’s R01, which includes Drs. Glass and Shellhaas as co-investigators seeks to apply their predictive model for post-neonatal epilepsy after acute provoked neonatal seizures to a new, larger cohort.

Click HERE to read more about the Neonatal Seizure Registry, their work, and resources.