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A research registry is a database that collects medical and daily living 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 research 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 research registry aims to improve understanding of HIE, fill data gaps, 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 registry, the HIE patient-family research 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 can and DO 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.

The HIE research registry is built on the successful and long-standing Cerebral Palsy Research Network's platform, not a random untested or personal platform, to ensure it meets rigorous standards protecting privacy and data.

Key Privacy & Data Protection Practices

• De-Identified Data: All personally identifying information (such as names, Social Security numbers, and specific addresses) is removed when patient data is transferred to the Data Coordinating Center. Only the treating medical center retains the direct link to the patient.
• Secure Storage: Clinical and community registry data is stored on protected, HIPAA-compliant servers (located at institutions like the University of Pittsburgh or via secure network setups).
• Minimal Risk Classification: Because the databases are fully de-identified, participation in the registries is categorized as minimal risk.
• Data Usage and Sharing: Information is used for administrative metrics, diagnostics, and driving healthcare improvements or research. Personal data is never sold, though it may be disclosed for legal and safety requirements.
• Account Controls: Registered users on the community portal can control their preferences, notifications, and profile details.