When a baby is diagnosed with hypoxic-ischemic encephalopathy (HIE), families and medical teams enter one of the most intense experiences of their lives. Every monitor, every scan, every decision carries enormous weight. And then, eventually, discharge day comes — and for most families, the sustained attention of the medical world quietly moves on.
For researchers and clinicians, there's a parallel frustration: the data trail goes cold. We don't have good systems to follow these children over time. The outcomes we measure rarely reflect what families say matters most. And when scientists at different hospitals try to compare findings, they're often working from completely different data sets, collected in completely different ways.
The HIE Registry was built to address all of this at once.
The HIE Registry is a new multicenter research platform that does something that hasn't been done before in the HIE world: it links what doctors document in the hospital with what families experience at home — and it was built with both audiences in mind from the very beginning.
The registry is a partnership between two organizations:
Hope for HIE — the leading patient advocacy organization for HIE families, founded by parents who lived through what you may be living through right now — and the Cerebral Palsy Research Network (CPRN), which brings years of experience building and running long-term research registries for families and clinicians in the cerebral palsy community.
Together, we've created a platform with two connected parts: a clinical registry that captures detailed information about a baby's NICU course, and a community registry where families can share their own experiences through surveys. The two are linked using a privacy-protecting tool called a Clinical Research Identifier (CRID), which connects a child's clinical record to their family's survey without sharing any personal identifying information.
If you're an HIE family, you already know there are questions that never get asked at follow-up appointments. What was it really like in the NICU? Did you feel heard by your care team? What do you wish someone had told you before discharge? What does your child's daily life actually look like now?
These aren't soft questions. They're data. And until now, they've largely been missing from HIE research.
When family-reported experiences are woven into the same database as clinical findings, researchers can start answering questions that matter not just to scientists, but to the families who will live with those answers: What does long-term life look like after HIE? Which experiences in the NICU predicted better outcomes — not just medically, but for the whole family? What do families need most, and when?
Your participation in the community registry is how those questions get answered.
For those on the clinical and research side, the registry addresses two of the biggest barriers to progress in HIE: lack of longitudinal data and lack of standardization across sites.
The pilot launched in 2025 across two sites with deliberately different approaches:
Both sites captured the same 38 core clinical data elements — covering perinatal events, clinical management, neuroimaging, and EEG findings — demonstrating that harmonization across specialties and workflows is achievable. Future expansion will align these elements with the NICU core data set developed through the Newborn Brain Society workgroup (Peeples et al., in review).
The clinical registry contained 22 prospectively enrolled patients from Colorado and 463 retrospectively collected patients from Washington University. On the community side, 15 caregivers enrolled, 14 successfully linked their CRID to clinical records (93% success rate), and 10 completed surveys about their NICU experience.
For a first pilot, those numbers represent something important: the model works. Clinical and family data can be connected, across sites, across specialties, at scale.
The privacy question is one we take seriously, and the CRID is our answer to it.
When families enroll in the community registry, they generate a unique code — their CRID — from their own information. That code is what connects their survey responses to their child's clinical record. No names, no birth dates, no direct identifiers are shared between the two systems. The link exists, but your privacy is protected throughout.
This matters both ethically and practically: families need to trust that participating in research won't compromise their privacy before they'll engage. The 93% linkage success rate in our pilot suggests families can navigate this process successfully — and that trust can be built.
The registry is a foundation, not a finished product. Our next priorities are:
The long-term vision is a registry that powers natural history studies, informs clinical trial design, supports quality improvement at participating institutions, and helps develop outcome measures that reflect what families — not just clinicians — define as meaningful progress.
Whether you're a family who has lived through HIE or a clinician who cares for these babies, the HIE Registry is for you.
For families: Ask your care team if your hospital participates in the HIE Registry, or reach out to Hope for HIE to learn more about the community registry and how your experience can shape future research.
For clinicians and researchers: We are actively expanding to new sites. If you're interested in joining the registry, collaborating on research questions, or learning more about the data infrastructure, we'd love to connect. Find us at PAS 2025 or reach out directly through Hope for HIE.
Every child who leaves the NICU after HIE deserves a research system that keeps following them — and every family deserves to be part of the conversation that shapes what we learn. The HIE Registry is how we get there.
The HIE Registry is led by Danielle Guez-Barber, MD (University of Colorado / Hope for HIE), Maggie Jalowsky (Hope for HIE), Zach Vesoulis, MD (Washington University in St. Louis), Eric S. Peeples, MD (University of Nebraska Medical Center), Paul Gross, Patrick G. McPhee, Betsy Pilon (Hope for HIE), and Joyce Trost (Cerebral Palsy Research Network).
Funded by the Pediatric Epilepsy Research Foundation. Supported by the Cerebral Palsy Research Network.
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