About

About the rrHBL Registry

Why a registry?

Hepatoblastoma is the most frequent liver cancer affecting infants and children. While cure is possible in approximately 80% of patients, many children progress on initial therapy with refractory disease, having not achieved remission (refractory), or relapse after having achieved remission (relapse). No standards of care exist for such children, as relapsed/refractory hepatoblastoma (rrHBL) and relapsed/refractory hepatocellular neoplasm – not otherwise specified (rrHNC-NOS) has not been formally studied to any significant extent through the international and national cooperative group mechanisms. This registry will fill this gap.

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

What is the rrHBL Registry?

The Relapsed and Refractory Hepatoblastoma (rrHBL) Registry is one of the core initiatives of the Liver Tumors Research Consortium (LTRC), which is a collaboration among physicians and other care providers, scientists, and additional stakeholders (patients, parents), dedicated to gathering data and biological samples from children, adolescents, and young adults with liver tumors. These stored data and samples will ultimately support hypothesis-driven research to gain a better understanding of the clinical behavior and biology of rrHBL and relapsed and refractory hepatocellular neoplasm – not otherwise specified (rrHCN-NOS) and develop better treatment options and outcomes for patients everywhere.

The rrHBL Registry will:

  • Enroll patients diagnosed with rrHBL (all ages) and/or rrHCN-NOS (<6 y.o. at initial HCN-NOS diagnosis)
  • Collect the following:
    • Clinical and Radiographic Information
    • Banked Tissue Samples
    • Optional: Fresh Tissue, Blood, Urine, Saliva/Buccal Cells
  • Provide a source of comprehensive data and samples for use in future hypothesis-driven rrHBL and rrHCN-NOS research