HERO Kids Information for Families and Young Adults

What is HERO Kids Registry?
HERO Kids Registry is a voluntary, no-cost system that lets any Oregon family share critical information about their child’s health before an emergency. The information can be quickly and easily accessed by emergency medical services (EMS) and hospital emergency department (ED) providers, so they have the information they need when they need it.

Who is HERO Kids for?
HERO Kids is for any Oregon child or young adult (through age 26). It is especially useful for young people with complicated or chronic health conditions, and for those who experience developmental disabilities or mental health conditions.

Why should I register my child?
In an emergency, every moment counts. By registering with HERO Kids, you give EMS and ED providers a head start on understanding your child's medical history, unique needs and individualized supports. For example, it helps emergency responders to know if a young patient is non-verbal.

How does it work?

  1. In an emergency, the person calling 911 gives the dispatchers your child's HERO Kids Registry ID number, or just tells them the child is registered.
  2. Once EMS and ED providers know your child is registered, they can get the information you provided in less than 90 seconds, through a confidential provider line or the Emergency Department Information Exchange.

Who can access the HERO Kids Registry, and is it secure?
To protect privacy and confidentiality, only the following people have access to the Registry:

• The parent or legal guardian who registers the child
• Young adults who register themselves
• HERO Kids Registry staff, who are trained to comply with all health privacy laws (HIPAA)
• Oregon EMS and Oregon ED providers who are treating the child

Who updates my child's registration when there’s a change?
Parents or legal guardians update their child’s HERO Kids Registry information as needed. Young adults who register themselves update their own information.

How do I register my child? (NOTE: Young adults aged 15-26 years can register themselves.)

  1. Gather health information emergency responders might need. This includes diagnoses, medications and allergies, emergency protocol letters, emergency information forms, etc.. After-visit summaries can be a good source for much of this information.
  2. Start registering by clicking the yellow button on this page (computer or tablet only - no phones at this time). If you prefer paper, you can request the form by emailing herokids@ohsu.edu.
  3. HERO Kids Registry staff activate the registration. If there is a problem, they will get in touch with you to resolve it.
  4. In a few weeks, you will get a confirmation packet in the mail with a welcome letter, stickers, and a backpack tag with the HERO Kids Registry ID number on it.

Can my child’s doctor create or update the registration?
Only parents, legal guardians, and young adults aged 15-26 can create or change a registration. You can work with health care providers to make sure the information is correct and complete.

Does HERO Kids train EMS to manage complex medical or behavioral health conditions?
No. HERO Kids shares the information you give to the Registry, to help them provide better-informed emergency care and services.

How do I update information or cancel registration?
Minor changes to contact information can be made by calling the registry business office. You can update the registration online any time. You can cancel by email or mail. Details are included in the packet you get in the mail after you register.

Is there anything else I should do to prepare for a medical emergency?

  • Make an appointment to visit your local EMS agency or fire department with your child or young adult. Let the emergency responders know that your child or young adult is registered with HERO Kids Registry.
  • Share the Registry ID with health care providers, school staff, caregivers, and family members.
  • Review the Planning for Health Emergencies Toolkit at www.oregonfamilytofamily.org.