Many of you know all about the Casey’s Circle events, our parent training, and the many tools and resources we offer online as well as our bereavement services. Did you know that Casey’s Circle also works with medical professionals to help with research studies? Currently we are working with a group to help define the best standard of care for neonates that experience seizures. We are very excited to announce that this study has been going very well and we recently met a an important milestone.
We received funding from the Patient Centered Outcomes Research Institute (PCORI) to carry the Continued Anticonvulsants After Resolution of Neonatal Seizures study, a large, multi-center observational research study to better understand how to treat seizures in newborns. We also want to understand how the medical treatments for newborn seizures can impact families as their children grow.
Our 9 participating hospital sites and Parent Partners advisory group span from coast to coast. Families were invited to participate in the study if their baby was born at or transferred to one of our 9 study centers, their baby’s seizures began less than 4 weeks after the baby’s full term due date and required medication to treat, and the family speaks and reads English or Spanish.
We are pleased to announce that we have met our recruitment target and have 304 babies and their families enrolled in the study. As we follow these infants and their families through the first two years of their lives, we will learn about how the neonatal seizures and their treatment influence child development, later seizures, and family well-being. We hope the results of this work will help doctors and families of newborns with seizures as they make treatment decisions and will provide clear information about what to expect for the future.
For more information about the study, please visit the PCORI website:
Continued Anticonvulsants After Resolution of Neonatal Seizures: A Patient-Centered Comparative Effectiveness Study