1. EHE is a rare vascular sarcoma that originates in the blood vessels.It can appear almost anywhere in the body, but common sites include theliver, lungs, and bones. The cause of EHE is presently unknown, and noproven treatments exist. EHE tumors can behave differently from onepatient to the next, with some being stable for years while othersprogress quickly. The cancer often metastasizes throughout the body andpossesses the ability to transform into an extremely aggressive statewith little or no warning. In short, EHE is an unpredictable diseasewith potentially lethal consequences.
2. There are many future projects that we hope to fund, but currentlywe are raising funds for a retrospective study. This study will addressan issue all EHE patients can relate to: there are no standardtreatments for EHE. Funding will address this common issue and givedoctors of EHE patients options for evidence-based treatments.
This study is a multi institutional international project. EHE is highlyunpredictable and exhibits a broad variety of clinical behaviors, so wemust include as many EHE patients as possible to obtain reliable information.
The math is simple: -Amount of funding we have for this study = more -Hospitals will participate = more -EHE cases will be included = dataobtained will be more comprehensive and accurate.
The main goal of the study is to assess: • Local and systemic treatment modalities applied to EHE across variousEHE locations and response to these treatments • Difference in progression between interventional treatment and “waitand watch” approach • Clinical and radiological presentations indicative of EHE progression • Utilized symptoms management and the impact on quality of life