Hope for HIE – Hypoxic Ischemic Encephalopathy Hope for HIE – Hypoxic Ischemic Encephalopathy

Join My HIE Journey

Welcome to My HIE Journey!

My HIE Journey is a free, private, and personal portal that connects you directly to the Hope for HIE community. Through this portal, you’ll gain access to research opportunities, including participation in the HIE Community Registry.

About the HIE Research Registry
Participation in the HIE Community Registry involves completing a series of surveys over time to provide medical and health information. If you choose to participate in the HIE Community Registry, here’s what to expect:

Step 1: Register for My HIE Journey
Create your free account and complete a brief demographic profile for yourself or your child.

Step 2: Complete the Research Consent
After registering, review and sign the consent form to officially join the HIE Community Registry.

Step 3: Create a Clinical Research ID (CRID)
Visit thecrid.org to create your Clinical Research ID (CRID). This CRID allows researchers to link your clinical information to your research information in a secure, privacy-protecting way.

Step 4: Review Your Research Dashboard
Once enrolled, visit your Research Survey Dashboard to view and complete any research surveys you’re eligible for.

Questions?
If you have any questions about this portal or research registry, contact the team at: hieregistry@hopeforhie.org.

This project was funded by the Pediatric Epilepsy Research Foundation (PERF). Additionally, this work is made possible through partnership with the Cerebral Palsy Research Network (CPRN), whose generous support and collaboration have supported the development and maintenance of the registry.

Get Started!
Begin by joining My HIE Journey below and completing the intake form to start your participation.

Join MyHIE Journey
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We’ll email you when new programs are available, when there’s research news, or if there are significant updates from Hope for HIE. You can update your email preferences anytime in your profile at hopeforhie.org.
Which hospital or clinic referred you to MyHIE Journey?

Demographics

Full Name of Person with Hypoxic Ischemic (HIE)
Full Name of Person with Hypoxic Ischemic (HIE)
First
Last
Your Full Name
Your Full Name
First
Last
What is your relationship to person with HIE?
Date of birth for the person with HIE
Gestational age (the age of the pregnancy, calculated from the woman's last menstrual period) at birth for the person with HIE. For example, if a woman was 39 weeks and 3 days pregnant at the time of birth, the gestational age at birth is 39 weeks.
Sex Assigned at Birth
Gender of person with HIE?
Race of the person with HIE (check all that apply)

Contact Information

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Program & Participation Interest

Do you have interest in participating in Hope for HIE programs and services?
All participants will have the ability to opt-out at any time.
Which programs and services would be of interest to you?
Check all that apply
Home Address
Home Address
City
State/Province
Zip/Postal
Country (Hope for HIE may occasionally send mail and/or care packages as part of the Super Sibs, Birthday Card, and Pen Pal programs)
Shipping Address (if different than Home Address)
Shipping Address (if different than Home Address)
City
State/Province
Zip/Postal
Country

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