Full TitleFibrolamellar 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:
- Facilitate patients’ access to clinical trials and the genetic evaluation of their tumors (such as next-generation sequencing through MSK-IMPACT)
- Create efficient collaboration between 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.
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.