EHE Global Patient Registry

Patients Powering Research for Epithelioid Hemangioendothelioma

EHE Global Patient Registry

The EHE Global Patient Registry empowers people with Epithelioid Hemangioendothelioma (EHE) to join together to improve our understanding of this ultra-rare sarcoma.

Together, we will advance research to ultimately find effective treatments and a cure for EHE. This registry aims to create a large, global, long-term database and resource about EHE. EHE is incredibly rare, so it is important that as many people as possible join the registry. People who have been diagnosed with EHE (or their legal adult representative) from anywhere in the world are encouraged to join and describe their experience with EHE over time. The registry is hosted by the National Organization for Rare Disorders (NORD®) on their IAMRARE® platform.

Download Patient Registry Flyer

For questions, please email [email protected].

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EHE Global Patient Registry
Frequently Asked Questions (FAQs)

Below are some of the frequently asked questions to help you learn more about the EHE Global Patient Registry. If you have further questions, contact us at [email protected].

What is a Patient Registry?
What is the purpose of the EHE Global Patient Registry?
What is a Natural History Study?
How is the data collected?
What types of data will be collected in the EHE Global Patient Registry?
Who is conducting this research?
Who is The EHE Foundation?
What is a Principal Investigator?
Who is a Study Participant?
What is a Legally Authorized Representative (LAR)?
What is an Informed Consent Form (ICF)?
After consenting, can a Participant choose to stop participating in the registry?
What is an Institutional Review Board (IRB)?
Who can join the EHE Global Patient Registry?
Is there a cost to participate?
Is there a payment for participating?
How long will this registry last?
Can data be collected worldwide?
Where is the data stored?
Is the data safe?
Who owns the data?
How is the registry maintained?
What is a Registry Advisory Board?
Who is NORD – the National Organization for Rare Disorders, Inc.?

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