The Fibrolamellar-Hepatocellular Carcinoma Consortium

The Fibrolamellar-Hepatocellular Carcinoma Consortium is a collaborative initiative that has been developed to improve treatment options for people with this rare cancer.

Led by Memorial Sloan Kettering Cancer Center in conjunction with Johns Hopkins University and the University of California, San Francisco, the consortium’s mission is to:

  • Promote awareness about fibrolamellar-heptocellular carcinoma (FLL-HCC) within the oncology community
  • Develop new therapies for FLL-HCC
  • Pool information on patients with FLL-HCC in order to document trends in diagnosis, treatment, and survival

The consortium opened a clinical trial in July 2012 testing a novel treatment designed specifically for FLL-HCC. The treatment targets certain cell-signaling pathways that appear to be overactive in this disease. This is the first clinical trial dedicated to patients with advanced FLL-HCC who cannot be treated with surgery.

In addition, the consortium plans to open a registry to collect information on patients with FLL-HCC. Patients who agree to participate will be asked to donate a blood sample as well as available tumor material. These samples will be banked and used for future research projects on FLL-HCC.