Funded epidemiology efforts

Below are descriptions of FCF-funded projects designed to help further define the FLC patient base.

Project summaries: Epidemiology efforts

Defining incidence of fibrolamellar carcinoma through computational analysis of multiple data typesUCSF and FCFActive

Timeframe: 2021 – 2022

Investigators: John Gordan, MD, PhD, Assistant Professor, Department of Medicine, UCSF; Travis Zack, MD, UCSF; and Kurt Losert, FCF

Goal: Develop updated estimate for US national incidence of FLC

The most cited study of national incidence of FLC, using data from the National Cancer Institute’s Surveillance, Epidemiology, and End Results (SEER) Program, reported an incidence of approximately 0.02 per 100,000. However, this rate is significantly lower than might be expected based on observations from clinical practice which indicate that the incidence of FLC in the United States equals approximately 1% that of HCC. This study is analyzing and combining data from nationally aggregate billing record datasets and major healthcare organization’s electronic medical records to re-estimate the national incidence of FLC.