For Patients
EHE Global Patient Registry
Welcome to the EHE Global Patient Registry!
Welcome, and thank you for supporting this important global patient-powered research initiative. Together, we will learn more about EHE so that we can better advance research to ultimately find effective treatments and a cure for EHE.
The EHE Global Patient Registry is an online registry for people with epithelioid hemangioendothelioma (EHE). This registry includes a series of surveys, which asks questions about a person’s experience with EHE over time. The registry is sponsored by The EHE Foundation and hosted by the National Organization for Rare Disorders (NORD®) on their IAMRARE® platform. This registry is only intended to collect information from participants (or their authorized representatives) who have been diagnosed with EHE. More information about the registry can be found on The EHE Foundation’s registry webpage at https://fightehe.org/registry.
What is the EHE Global Patient Registry?
The EHE Global Patient Registry is a collection of standardized information collected systematically over time about patients who have been diagnosed with EHE.
The registry has been created with the intent to develop a large, global and long-term database and resource on this rare cancer and invites people with EHE from around the world to contribute their information and help advance EHE research. Data compiled in the registry aims to answer important questions, allow a better understanding EHE, and potentially identify new research opportunities.
What types of data will be collected in the EHE Global Patient Registry?
The EHE Global Patient Registry collects data on the following topics:
- Socio-demographics
- Medical history and diagnostics
- Treatment and disease progression
- Management of care
- Quality of life
Is the data secure?
The EHE Global Patient Registry follows strict government guidelines to assure patient information is protected. The platform is served over HTTPS, which means that the data is encrypted when being sent from the user’s browser to the NORD servers. The data is also kept encrypted in the NORD database. Communications between the registry platform application server and the database are also encrypted. As with any information one provides electronically, there is a very rare chance that privacy could be compromised. However, the registry and the security measures minimize the chance of this occurring.
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