Background

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) has not been formally studied to any significant extent through the international and national cooperative group mechanisms. This registry will fill this gap by prospectively collecting data on children with rrHBL, as well as biological material, to help advance knowledge, treatment standards and effectiveness, as well as research into novel/better therapies.

The Relapsed/Refractory Hepatoblastoma (rrHBL) Registry provides the infrastructure for acquisition of biological specimens, imaging, and correlative clinical data to facilitate biology studies and characterization of rrHBL. This Registry is a key core initiative of the Liver Tumor Research Consortium (LTRC), which is a collaboration among physicians and other care providers, researchers and scientists, and additional stakeholders (patients, parents), dedicated to stimulating research initiatives to better understand disease biology and pathophysiology and innovate novel therapies. An aim of this consortium and specifically this registry is to gain a better understanding of rrHBL so we can help develop better treatment options and outcomes for patients everywhere.