For Researchers

EHE Global Patient Registry

For Researchers

The EHE Global Patient Registry was created with the intent to develop a large, global and long-term database and resource on this ultra-rare cancer. The data collected in the registry will be used by researchers to study EHE with the following goals:

  1. To describe the people who have EHE and to better understand the variability and stages of EHE
  2. To understand how EHE changes over a person’s lifetime
  3. To learn about clinical practice patterns and variations in the management of EHE
  4. To help identify hospitals and doctors who are treating people with EHE so that we can provide a resource for new patients with EHE
  5. To identify people with EHE who might be willing to take part in other research studies or clinical trials
  6. To support the development of, or collaboration with other EHE or relevant disease databases to advance research
  7. To educate the EHE community of various aspects of EHE disease presentation and utilized treatment modalities
  8. 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

Registry questionnaires have been built from common data element standards and cover the following topics:

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

If you would like access to de-identified data from the EHE Global Patient Registry for a research project, please contact our registry administrator at [email protected] for more information. Access to de-identified registry data is contingent upon project approval by the EHE Global Patient Registry Advisory Board.