International Registry for Cardiac Angiosarcoma Collecting Patient Data and Treatment Outcomes to Improve Care

What this Trial Is About

Primary cardiac angiosarcomas are very aggressive tumors that develop in the hearts blood vessel lining, making up about 25%-30% of all primary heart cancers. This cancer mainly affects the right side of the heart and is known for rapid growth and damage to healthy heart tissue. The condition has a very low five-year survival rate of around 14%, and familial forms result in even shorter survival times. The goal of this international registry is to create a large database to better understand this rare and deadly disease by collecting detailed patient and treatment information from around the world. The registry collects clinical data including patient demographics, tumor details, treatments such as surgery, chemotherapy, immunotherapy, and radiation, as well as outcomes and side effects. It aims to analyze genetic, environmental, and lifestyle risk factors, evaluate treatment effectiveness, and develop guidelines for prevention, diagnosis, and management. Data quality and management are overseen by the Immune Oncology Research Institute. Participants provide information through questionnaires about their medical history, diagnosis, treatment, complications, and follow-up outcomes. Researchers will monitor survival and disease progression over time, focusing on measures such as 6-month overall survival and longer-term remission rates. The registry promotes collaboration among international healthcare providers and helps guide future clinical trials and treatment advances for cardiac angiosarcoma. The study is planned to run until May 2035.

Cardiac Angiosarcoma International Registry