Hand to Hold's Official Blog: Written by Parents for Parents

Researchers and Parents Working Together Meet Research Milestone

The NICU community is a world in which information and ideas are shared and collaboration is key. Hand to Hold often has the opportunity to work with medical professionals and other organizations on a variety of research studies. One such research study has been funded by Patient Centered Outcomes Research Institute (PCORI) and will help define the best standard of care for NICU babies experiencing seizures.

From the announcement:

“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: https://www.pcori.org/research-results/2016/continued-anticonvulsants-after-resolution-neonatal-seizures-patient-centered.

Read more stories from our community:

Surviving the Unknown: Seizures

Seizures at Birth: Meilani’s Journey

Leigh Ann Torres About Leigh Ann Torres

Online Community Coordinator, Preemie Babies 101 Lead Blogger - Leigh Ann Torres is a freelance writer, blogger and mother of three living in Austin, TX. After a short and sudden bout with severe preeclampsia, Leigh Ann’s identical twin girls were delivered at 31 weeks, spending 38 mostly uneventful days in the NICU. Two years later the Torres family welcomed another baby, this time at term, with only a mild case of preeclampsia. Leigh Ann currently runs Hand to Hold’s official blog and social media channels. When she’s not doing laundry or fulfilling requests for snacks, she usually has her nose stuck in a book. You can keep in touch with Leigh Ann on Twitter or via email.

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