Frequently Asked Questions

EHE Global Patient Registry

Frequently Asked Questions

Thank you for your interest in the EHE Global Patient Registry. Below are some of the frequently asked questions to help you learn more about this registry. An expanded list of questions can be found on The EHE Foundation’s website at at If you have additional questions, please contact us at [email protected].

Who can join the EHE Global Patient Registry?

This study is open to anyone who has been diagnosed with epithelioid hemangioendothelioma (EHE) and meets the study inclusion criteria for participation.

What is a Patient Registry?

A patient registry is a collection of standardized information about a group of patients who share a condition. The information may be used for a variety of purposes such as conducting natural history studies and supporting disease specific clinical trial recruitment.

What is the purpose of the EHE Global Patient Registry?

The purpose of the EHE Global Patient Registry is to bring the EHE community together and collect data from patients to advance knowledge about EHE. The registry has been created with the intent to develop a large, global and long-term database and resource on this rare cancer. The EHE Foundation invites people with EHE from around the world to contribute their information and help advance EHE research. Data compiled in the registry might answer important questions, allow a better understanding EHE, and potentially identify new research opportunities.

The registry has the following goals:

  • To describe the people who have EHE and to better understand the variability and stages of EHE
  • To understand how EHE changes over a person’s lifetime
  • To learn about clinical practice patterns and variations in the management of EHE
  • To help identify hospitals and doctors who are treating people with EHE so that we can provide a resource for new patients with EHE
  • To identify people with EHE who might be willing to take part in other research studies or clinical trials
  • To support the development of, or collaboration with other EHE or relevant disease databases to advance research
  • To educate the EHE community of various aspects of EHE disease presentation and utilized treatment modalities
  • To help to develop best practices, management guidelines, and recommendations so that clinicians can know how to give the best care to improve the quality of life and treatment outcomes for people with EHE
  • To empower and advocate for expanded insurance coverages and to assist the EHE community with the development of recommendations and standards of care.

What types of data will be collected in the EHE Global Patient Registry?

The data collected includes but is not limited to:

  • Socio-demographics
  • Medical and diagnostics
  • Treatment and disease progression
  • Management of care
  • Quality of life

After consenting to join the registry, can a person choose to stop participating in the registry?

Participants are able to stop participating and withdraw from the registry at any time. However, researchers may still use the information that they have collected prior to the participant changing their mind. Information that has already been shared with researchers prior to withdrawal cannot be retrieved or removed.

The Informed Consent Form is available upon request for review. Please email [email protected] to request the appropriate Consent form by telling us if you are an adult over the age of 18 consenting for yourself, a legally authorized representative consenting for a person under the age of 18 or an adult who cannot consent his/herself, or a designated representative of someone who is deceased.

Who is conducting this research?

The EHE Global Patient Registry is being sponsored and conducted by The EHE Foundation. A research study sponsor is an individual, company, institution, or organization responsible for assigning appropriately trained and experienced researchers and staff to conduct a study. The sponsor is also responsible for the initiation and management of this registry, as well as any costs associated with the registry. As the sponsor, The EHE Foundation’s responsibility is to ensure that this registry is conducted in a reputable, ethical manner and upholds regulations as they apply to this research.