Fibrolamellar Carcinoma Global Dynamic Registry

Full Title

Fibrolamellar Carcinoma Global Dynamic Registry

Purpose

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.