Frequently asked questions

Fibrolamellar Carcinoma (FLC) was first described by Edmondson in 1956, it is a rare form of liver cancer (5%) which occurs in non-cirrhotic livers of adolescents and young adults. Tumors have a distinct pathological feature. They are usually well circumscribed masses characterized by well differentiated polygonal hepatic cells with eosinophilic and granular cytoplasm surrounded by thick, fibrous stroma arranged in bands.

Two hundred cases of FLC are diagnosed each year worldwide.

In view of the extreme rarity of the cancer, and its unique prevalence in adolescents and young adults, creating a patient-centered registry is applicable and valuable. The registry has the potential to produce a database that is an important source of information regarding health care patterns in FLC, and treatment outcomes. This knowledge and collaboration will ultimately lead to identify therapies and improve patients outcomes. This effort is also tailored to provide support to the families and communities. This registry will translate into a prominent global database, an ample source of information, and global collaborations. This is a first of a kind study; the success of this project can be applied to other cancers in the future.

Your information will help our researchers understand the characteristics of FLC, which can be further studies in future studies to understand how an individual’s biology accounts for the occurrence of cancer and how it affects outcomes.

The study doctor as well as the research staff involved in the study will have access to your answers. The entire team is trained on patient privacy and will ensure your answers are accessed solely for the purposed of the study.

The study team will be able to link the answers to the participant. Your data and answers will be completely de-identified if shared with any research collaborators outside of the primary study team.

Your privacy is very important to us, and the researchers will make every effort to protect it. Trained staff at Memorial Hospital may review your records, if necessary. Access to your protected health information will be limited to those listed in the Research Authorization form, which is a part of the informed consent process. Your information may be given out, if required by law. For example, some states require doctors to make a report to the state health board if they find that a participant in a research study has a contagious disease like tuberculosis. However, the researchers will do their best to make sure that any information about you that may be released will not identify you.

Due to the rare nature of the FLC, there is limited data currently available regarding the characteristics of individuals with FLC including phenotype, demographics, family history, medical history, exposures, behavioral patterns, treatment, and outcomes. Any data we can obtain will help in the fight of FLC.