Join us next Thursday, April 9th at 8 pm ET to learn about important progress for our cerebral palsy registry. About 18 months ago, we shared an exciting idea with the community: what if we could extend our registry so that it tracks babies born with hypoxic ischemic encephalopathy (HIE) — from their very first days in the neonatal intensive care unit (NICU) all the way through childhood and beyond? If you missed that introduction, you can watch it here.

Since then, we got to work. And we have real results to share with you especially NOW since it is HIE Awareness Month!

Hypoxic Ischemic Encephalopathy (HIE) happens when a baby’s brain doesn’t get enough oxygen or blood around the time of birth. It is among the most common causes of newborn death and disability worldwide, and it can lead to conditions like cerebral palsy, epilepsy, learning disabilities, and vision problems.

Here’s the frustrating part: most research on HIE only follows children until age two. But families tell us that many of the challenges their children face don’t show up until school age or even the teen years. On top of that, the outcomes that researchers typically measure aren’t always the ones that matter most to families living with HIE every day.

A registry that collects both medical data and information directly from parents and caregivers — and follows children for years — is exactly what the HIE community needs.

With $100,000 in planning grant funding from the Pediatric Epilepsy Research Foundation, and in partnership with the Newborn Brain Society and Hope for HIE, our team set out to demonstrate that this registry could work.

Here’s what we demonstrated:

We successfully collected clinical data from the NICU at two different hospitals. We partnered with Hope for HIE to create a way for parents to share their experiences directly through the Hope for HIE website. We showed that we can link those two sources of information — medical records and parent reports. This linking process was done in a way that protects the families’ privacy.

Building on this proof of concept, we are now applying for a full $300,000 infrastructure grant from the same foundation to grow this registry into something that can truly serve the HIE community at a national scale. More hospitals. More families. Longer follow-up. And outcomes chosen by and for the people who know HIE best.

This webinar isn’t just about us presenting to you. We want to hear from you. The CP Research Network was built on the belief that research is better when families are part of it. Your questions, your experiences, and your priorities shape where this work goes next.

Join Dr. Danielle Guez Barber, principal investigator for our HIE registry, Betsy Pilon, Executive Director for Hope for HIE, and Dr. Joyce Trost, Vice President of the CP Research Network, on Thursday, April 9 at 8 pm ET to hear what we’ve built, what we’ve learned, and what we’re hoping to do next — and to tell us what matters most to you. Can’t make it? — The webinar will be recorded and posted to our YouTube channel within 24 hours.
Click here to see Our NICU Registry – Progress for Hypoxic Ischemic Encephalopathy