Background

The Liver Tumors Research Consortium brings together physicians, scientists, patients and families in a collaborative pursuit to better understand high risk pediatric liver cancers (relapsed/refractory hepatoblastoma and pediatric hepatocellular carcinoma), and develop better treatments and outcomes for patients everywhere.

Hepatoblastoma is the most frequent liver cancer affecting infants and children. While cure is possible in approximately 80% of patients, a minority of children progress on initial therapy (refractory) or recur after having achieved remission (relapse). No standards of care exist for such children, as relapsed/refractory hepatoblastoma (rrHBL) has not been formally studied though the international and national cooperative group mechanisms. The rrHBL Registry will fill this gap by prospectively collecting data on children with rrHBL, as well as biological material, to help advance treatment standards as well as research into novel/better therapies.

Pediatric hepatocellular carcinoma (HCC) is the second most frequent liver cancer diagnosed in children, traditionally affecting older children and adolescents. The majority of pediatric tumors arise in the context of a normal liver, as opposed to a cirrhotic liver, therefore these tumors are felt to be very different from tumors affecting adults. At the time of diagnosis, most cases of pediatric HCC are at an advanced stage meaning that their disease has already spread. In this context, the disease is very difficult to cure. There are no standards of care for children with pediatric HCC. The current enrolling Children’s Oncology Group trial is the first to study these children prospectively and only recently have clinical trials been designed to study relapsed or refractory disease. The Pediatric HCC Registry will prospectively collect data on children with HCC, as well as biological material, to help advance treatment standards as well as research into novel/better therapies. This registry will also collect data and biological material on pediatric patients > 8 years of age determine to have hepatocellular neosplams not otherwise specified (HCN NOS) or tumors felt to harbor characteristics of both hepatoblastoma and hCC.