This study establishes a patient registry of people with fibrolamellar cancer (FLC). FLC is a rare type of liver cancer that is seen in adolescents and young adults. Currently, there are no standard treatment options for people with this type of cancer. Researchers would like to better understand the disease and develop treatment options. The information collected in this study will help build a registry that provides useful information for researchers and others who are trying to better understand FLC. The registry may aid researchers in planning future studies, and it may guide patients to appropriate care and new research studies that could benefit their condition. The registry may serve as a resource for researchers and others wanting to learn more about FLC.
Study sponsor and potential other locations can be found on ClinicalTrials.gov for NCT04874519.
PRIMARY OBJECTIVE:
I. To build a registry of FLC through patient reported information, that could be studied further in future studies.
SECONDARY OBJECTIVES:
I. Facilitate patients' access to clinical trials and to genetic evaluation of their tumor (e.g. next generation sequencing through Memorial Sloan Kettering [MSK]-IMPACT).
II. Create efficient collaboration between patients, their families, communities, and healthcare professionals.
III. Create collaboration between FLC clinical researchers and scientists across the world.
IV. Provide information to assist public health officials and agencies in the planning and evaluation of cancer prevention and cancer control programs.
V. Translate the work to different cancers where same platform can be used.
OUTLINE: This is an observational study.
Patients complete questionnaires on study.
Trial PhaseNo phase specified
Trial TypeNot provided by clinicaltrials.gov
Lead OrganizationMemorial Sloan Kettering Cancer Center
Principal InvestigatorGhassan K. Abou-Alfa
