A registry is a centralized source of data gathered from patient’s clinical information that continually expands as patients are enrolled. Through this growing registry we are able to capture data from a large number a patients with varying demographic backgrounds and pool it together in a way that will allow for better characterization and understanding of rrHBL.
The rrHBL Registry is a key component of the Liver Tumors Research Consortium, with its data ultimately supporting hypothesis-driven research focusing on advancing the long-term goal of developing better treatment options and outcomes for rrHBL patients everywhere.
rrHBL registry will:
- Recruit and enroll patients diagnosed with rrHBL
- Gather clinical, demographic, radiologic, and pathologic data for enrolled participants on the registry
- Provide patients an opportunity to donate specimens
- Establish a pathway to collaborate with researchers around the world to meet our long-term goal of developing better treatment options and outcomes for rrHBL patients everywhere.