Fibrolamellar Carcinoma Global Dynamic Registry


Full Title

Fibrolamellar Carcinoma Global Dynamic Registry


The purpose of this study is to build a registry of fibrolamellar carcinoma (a rare liver cancer) cases through patient-reported information. This will help:

  • Create efficient collaboration among patients, their families, communities, and healthcare professionals.
  • Forge collaborations between fibrolamellar carcinoma clinical researchers and scientists around the world.
  • Provide information to assist public health officials and agencies in the planning and evaluation of cancer prevention and cancer control programs.
  • Facilitate patients’ access to clinical trials and the genetic evaluation of their tumors (such as next-generation sequencing through MSK-IMPACT).

Who Can Join

To be eligible for this study, patients must meet several criteria, including but not limited to the following:

  • Patients must have been diagnosed with fibrolamellar carcinoma.
  • Patients must have access to electronic devices with an internet connection and be able to run modern internet browsers (such as Google Chrome, Internet Explorer, Safari, or Mozilla Firefox).
  • Participants must have a Google account.
  • This study is for patients age 13 and older.

For more information about this registry, please contact Dr. Ghassan Abou-Alfa at 646-888-4184.



Disease Status

Newly Diagnosed & Relapsed/Refractory


Co-Investigators ID