You may have seen the news that Hope for HIE, Cerebral Palsy Research Network, and the Newborn Brain Society announced a collaboration and grant funding to build a patient-family data registry for Hypoxic Ischemic Encephalopathy.
You may be asking yourself “What does this mean to my child and family with HIE?”
You’ve got questions, we’ve got answers!
A patient registry is a database that collects medical information from individuals with a specific condition, in this case, hypoxic-ischemic encephalopathy (HIE). It helps researchers track health trends, treatment outcomes, and the needs of people affected by HIE.
There are several types of patient registries, each serving different purposes. Some registries are designed to track the long-term outcomes of a specific condition, like HIE, while others focus on treatment effectiveness or quality of life data. Registries can also be population-based, collecting data from a broad group of people, or specific to a particular condition, treatment, or region. The HIE registry is a condition-specific registry, aimed at gathering valuable insights into the experiences, needs, and outcomes of those impacted by HIE.
This registry, supported by a recent grant, aims to improve understanding of HIE and ultimately lead to better support, care, and treatments. By gathering data from HIE families, researchers and healthcare providers can identify patterns, address gaps in care, and tailor interventions to help those impacted by HIE.
Currently, while Hope for HIE’s deidentified anecdotal data share across its social media support groups has been instrumental in accelerating research, it is not a registry and is not intended to be one.
The planned registry will have TWO parts:
Electronic Medical Record (EMR) Enrollment: Building off of the existing Cerebral Palsy Research Network database, and collaborating with the Newborn Brain Society who has been undertaking work to identify Common Data Elements to be used across any HIE data registry. Families will be able to opt-in at the point of diagnosis in the NICU to automatically have their children’s deidentified data included in the registry from their medical records.
Patient-Family Inputted Data: Utilizing a similar format to the CPRN MyCP patient-family input registry, the HIE patient-family registry will be built in two phases. The first phase focuses on neonatal HIE, and the second phase will be for pediatric-acquired HIE. Patients and families will be asked to share data about the patient or child that will be deidentified in the data collection center about the medical, educational and life experiences with HIE. Families will be able to sign up for this registry sometime in 2025.
Families can make a difference! Participating means adding your story and data to a larger picture, which will help advance research, improve resources, and potentially influence treatment and policy. Every piece of information helps us understand HIE more deeply and drive change.
HIE REGISTRY WEBINAR – NOVEMBER 19, 2024
On Tuesday, November 19 at 8 pm ET, Dr. Danielle Barber, Principal Investigator of the HIE Registry, Hope for HIE medical advisory board and board of directors member, will be sharing more about the HIE Registry through a webinar hosted by CPRN.
WANT TO LEARN MORE?
Stay up to date with registry announcements and more by signing up for Hope for HIE’s eNewsletter:
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