Research Projects & Initiatives

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 hosted by the National Organization for Rare Disorders (NORD®) on their IAMRARE® platform. Click here to learn more or to join the registry.

The EHE Biobank is an open, ongoing collection of tissue samples and other biospecimens, including blood and bodily fluids donated by people with EHE. The Biobank has been developed by The EHE Foundation with the generous support of private donations and grants to accelerate EHE research. Click here to learn more about participating.

The EHE Foundation has partnered with xCures, a pioneer in healthcare data management, to gather medical information from EHE patients into structured, regulatory-grade clinical data. The xCures platform is a powerful tool for collecting and organizing medical data to study the natural history of EHE.

Data collected from medical records of people with EHE can be used by scientists and expert clinicians to build a comprehensive understanding of EHE, identifying potential best practices and treatment options. Among other benefits, registries and natural history studies accelerate EHE research, providing real-world data that can potentially support clinical trials and accelerate the approval of a drug or therapy that shows promising results.

All data from patients’ medical records is de-identified for use and analysis. 

Click here to learn more about the xCures Observational Study.

The EHE Foundation aims to identify and support impactful research that expands our understanding of EHE and accelerates the development of treatments and a cure for EHE. The Research Grants Program web page outlines previously funded research and provides information about applying for an EHE Foundation research grant.

Funded jointly with the EHE Rare Cancer Charity UK, the project is conducted by the Istituto Nazionale dei Tumori (INT) in Milan, Italy; the Institute of Cancer Research (UK); and the Royal Marsden Hospital, London.

The research program entitled “Evaluation of Cytokines and Hormones as Biomarkers for EHE” is a multi-center collaborative project that aims to:

• Identify novel prognostic and predictive biomarkers for EHE to inform patient management and potential therapeutic targets. 
• Develop patient-derived xenograft (PDX) models of EHE using tissue obtained from patients’ tumor specimens and assess the activity of drugs to treat EHE. 
• Better describe the natural history of the disease and its radiologic features and their correlation with clinical outcomes. 
• Collect prospective data on quality of life and the activity of systemic agents administered in EHE.

Jesse Boehm, PhD, Principal Investigator at the Koch Institute for Integrative Cancer Research at MIT was awarded a 3-year grant through the Department of Defense Rare Cancers Research Program Resource Community Development Award. This novel project aims to harness the power of patient-partnered research towards creating a platform for rare cancer drug target discovery. The key to its success is patient-donated tumor tissue from people living with EHE.

Through a partnership with The EHE Foundation, the Rare Cancer Research Foundation, and other rare sarcoma patient advocate organizations, the Boehm lab receives tumor tissue specimens from patients, turning tumor specimens into cell models. Newly created models are then evaluated to find the best therapeutic options to treat the disease.

Drug repurposing is a concept that aims to find new purposes for drugs that have already been proven to be safe in humans for other diseases. These initiatives could be a faster way to find new treatments for EHE. 

Often drugs are prescribed ‘off label’ or used for a disease that the drug has not been approved to treat. This is common for EHE as no drugs are specifically approved to treat this disease. Drug repurposing research seeks to build scientific and real-world evidence to support regulatory decisions and clinical treatment guidelines, ultimately enabling consistent and equitable access to effective therapies. 

The EHE Foundation partners with multiple drug repurposing initiatives aimed at identifying effective treatments for EHE.

CRDC

The EHE Foundation partners with the CURE Drug Repurposing Collaboratory (CDRC), an initiative of the Critical Path Institute (C-Path), as a member of the Sarcoma Task Force and Rare Coordinating Committee. The CDRC was founded to explore whether existing drugs can be repurposed for diseases, like ultra-rare sarcomas such as EHE.

The Collaboratory / C-Path, works in a transparent, open forum, with a diverse set of global stakeholders including clinicians, scientists, U.S. Health and Human Services (HHS) agencies, non-government organizations, and patient advocates.

Lamar Lab

John Lamar, PhD, Associate Professor of Molecular and Cellular Physiology at Albany Medical College is investigating the use of Pre-clinical EHE Models to Identify Druggable Pathways to Treat EHE to reveal pathways that can be targeted with existing FDA-approved drugs to either eliminate EHE or prevent its growth.

Cleveland Clinic

Ajaybabu Pobbati, PhD, Project Scientist at the Cleveland Clinic Lerner Research Institute initiated research in 2022 aimed to repurpose an FDA-approved drug for EHE and continues to further investigate drugs to regulate the TAZ-CAMTA1 fusion protein.

The EHE Foundation partners with the MyPART network of the NCI’s Rare Tumors Initiative (RTI) – which focuses on accelerating the translation of potential new therapies for rare tumors by bringing together patients, clinicians, researchers, and patient advocates in a Natural History Study of Rare Solid Tumors.