Pan-European EHE Prospective Observational Registry is launched

epithelioid hemangioendothelioma ehe

There was a lot of excitement as the INT team has been working hard over an extended period to develop the registry. This had not been easy due to the heterogenous nature of EHE providing a major challenge to all involved in creating the appropriate data capture infrastructure. Hugh Leonard was also thrilled to see the large number of institutes that had joined the project: 

 “Joining the project is not compulsory. Each institute that is eligible has to make its own decision as to whether to join the registry or not, so we were delighted to see that 22 hospitals had already joined the project. The registry team hope to add more hospital in the future, including international centres who have expressed interest, but the immediate focus will be on getting the project up and running first with the 22 initial participating institutions. 

Andrei Ivanescu was also present at the launch and was pleased to see INT leading this important project: 

This world-first registry will start to collect clinician-entered data from EHE patients across Europe, and hopefully over time will allow us to gain a greater understanding of the disease. It will also begin to standardise clinical practices and treatment of the disease as participating centres follow the study protocols. That too will be of significant benefit in managing and understanding EHE. 

It is important to keep in mind that there are different types of patient registries. The EHE Prospective Observational Registry includes people enrolled by their physician, with data entered into the study by the physician, including information about symptoms, disease presentation, treatments and outcomes. Another type of patient registry includes data entered by patients directly about their disease journey. This type of patient-contributed data will be captured by the EHE Global Patient Registry, coordinated by The EHE Foundation, which was also launched this year and is now gathering data from the global patient community. Together, these data provide the most comprehensive history of EHE. 

Denise Robinson was also excited to see the launch of this new registry: 

Capturing this data is so important as the design focuses on EHE, and over time the study will provide high-quality valuable data important for generating hypothesis and further interrogation of disease treatments. 

The EHERCC have always been confident that this study will play an important part in the future development of the understanding and treatment of EHE, and was why the charity had no hesitation is funding this important project.