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Big News for HIE Research: The HIE Registry Is Expanding

July 2nd, 2026  | News  | Research

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The HIE Registry — a combined effort between Hope for HIE, the Cerebral Palsy Research Network (CPRN), and the Newborn Brain Society (NBS) — has been awarded a three-year grant from the Pediatric Epilepsy Research Foundation (PERF) to expand what it can do. For our community, that means better data, better research, and better answers.

Why it matters

HIE has always been a condition that struggles with gaps in data. Limited long-term outcomes. Those gaps show up as delayed diagnoses, inconsistent access to therapies, and care built on incomplete evidence. A strong, expanded registry is how we start to close them.

Years in the making

This didn't happen overnight. The registry began as a community-driven Hope for HIE and CP Research Network collaboration, with a pilot that proved we could pull standardized data across different hospitals and systems, and link them with community-inputted data. A community convening then put families' priorities front and center. This PERF grant takes that groundwork and builds it out.

What the grant will do

The grant expands the registry in two directions at once — deepening what clinical sites capture, and expanding what families themselves report. Both matter equally, and together they start to tell the whole story.

• Growing the clinical registry. Across six sites, the registry will capture standardized NICU data elements, built on NBS's consensus Common Data Elements, plus consistent motor and cognitive outcomes, so children's development can be tracked and captured consistently across hospitals.

• Growing the community registry. Clinical records only tell part of the story. This expansion brings caregivers' own observations in directly, and shapes future surveys around the outcomes patient-families say matter most — sleep, behavior, independence, participation, and family well-being to start. This is the part of the story only patient-families can tell. Hope for HIE is building out a comprehensive Community Engagement Platform that will be called My HIE Journey -- we will be integrating the registry into this platform so families have access to support, education and research all in the same spot.

Underpinning both, the project will link data securely, using privacy-preserving, HIPAA-compliant methods that make the data more powerful preserving privacy.

A true partnership

Each partner brings something essential: Hope for HIE the community, CPRN the research infrastructure, and NBS the scientific foundation.

The grant is led by Dr. Danielle Guez-Barber at Children's Hospital Colorado — a physician-scientist, member of our Board of Directors, and an HIE parent herself. That's exactly how research should work: clinicians, scientists, and the families who live this every day, building the evidence together that will help the families who come next.

The real work starts now. To everyone who has advocated for better data and better answers — thank you. This is a step we get to take together. We will also be sure to communicate when the community registry is ready to join to the wide HIE community, so please keep in touch!

The core registry team has been meeting weekly for the last three years. We are fortunate to have committed, talented, and heart-driven partners. It started with Danielle Barber, Zach Vesoulis, Betsy Pilon and Paul Gross. It has expanded to the people pictured and listed below.

Pictured L to R: Dr. Eric Peeples (Newborn Brain Society & University of Nebraska), Betsy Pilon (Hope for HIE), Maggie Jalowsky (Hope for HIE), Dr. Danielle Guez Barber (Principal Investigator, University of Colorado & Hope for HIE), Dr. Zach Vesoulis (Site Investigator, Washington University at St. Louis), Paul Gross (CP Resarch Network), Joyce Trost, PhD (CP Research Network), Patrick McPhee, PhD (CP Research Network).

Hope for HIE is the leading global patient advocacy and support organization for neonatal and pediatric hypoxic ischemic encephalopathy (HIE), connecting and supporting more than 15,000 families across all outcomes and severity levels.