What is a registry?

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. Registries can include centralized collection of imaging and biological specimens as well, enabling investigations and insights from a wide variety of clinicians and researchers.

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:
  1. Recruit and enroll patients diagnosed with rrHBL
  2. Gather clinical, demographic, radiologic, and pathologic data for enrolled participants on the registry
  3. Provide patients an opportunity to donate biological specimens
  4. 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.
registry