HERO Kids Registry

What is HERO Kids?

Health Emergency Ready Oregon = HERO

In an emergency, every moment counts. Currently, Emergency Medical Services (EMS) typically arrives on-scene with limited information and an incomplete picture of a patient’s health condition(s) and history. Children with physical, mental, or behavioral health conditions often have lengthy and complex medical records. In the midst of a crisis, vital information that emergency providers need may not be available.

HERO Kids is a voluntary, no-cost registry that will allow families to record critical details about their child's health - details that will inform EMS and hospital emergency departments. For providers faced with split-second decisions, the HERO Kids registry will fill the pre-hospital information gap. Families across Oregon will have easy access to this reliable system for health emergency preparedness.

HERO Kids will initially serve children, youth, and young adults who are medically fragile or complex, or who experience chronic health conditions, developmental disabilities and/or mental or behavioral health conditions. Although these young people stand to benefit most from HERO Kids, the registry will ultimately be available to any Oregon child.

Watch an 80-second video about HERO Kids.

Who is developing HERO Kids?

HERO Kids is being developed by the Oregon Center for Children and Youth with Special Health Needs, in partnership with Oregon Health Authority’s Emergency Medical Services for Children program (EMSC), Oregon Portable Orders for Life-Sustaining Treatment (POLST) Registry, and Beyond Lucid Technologies LLC. We are grateful for input and expertise from emergency medical services agencies, professional organizations representing pediatric health care providers, hospitals, clinics, and public health programs. Family members of children with special health needs are providing their expert advice, as are youth who might benefit from the service. The Registry will be securely housed at OHSU. In the event of a medical emergency, EMS and emergency departments will have immediate access.

HERO Kids will launch in 2022.

HERO teen

I am 16 years old and I have a disorder called osteogenesis imperfecta that causes brittle bones. I have had more than 60 bone breaks. I have first-hand experience calling 911. I was at a friend’s house a few years ago when a dog knocked me down, fracturing my femur. I was in excruciating pain when I explained my condition to a 911 operator, and to EMS when they arrived. With a HERO Kids registry in place, EMS would have had all the information they needed about me and my condition before they showed up. They would have been better prepared to quickly assess me, get me pain relief, and transport me to the hospital. If EMS ever responds to a situation where I can’t speak, they need to know that CPR will break my ribs. As a person with a disability you cannot see, this registry is very important to me.     – Trinity R.