Registry-Inspired Fibrolamellar Research

Research In Progress From Our Data

Sharing your medical journey as a member of the Fibrolamellar Registry has real-world impact. Here are some of the studies that have come about using the Registry’s dataset.

Two Important Science Journals Publish Articles Using FibroRegistry Data

A study with direct clinical implications for inhibiting an unwanted protein in fibrolamellar cells was just published in JCI Insight (Journal of Clinical Investigation) using data from the FibroRegistry. View article.

A second article, based entirely on our data, has been accepted into Hepatology Communications, titled "Clinical and Demographic Predictors of Survival for Fibrolamellar Carcinoma – A Patient Community Registry-Based Study." This study also has significant news for fibrolamellar investigators. View article.

Immune Checkpoint Inhibitors Study

Oncologists at Johns Hopkins School of Medicine approached the Fibrolamellar Registry, asking for help learning more from our community about if and how a new class of drugs is working in fibrolamellar patients. They've reviewed the records to determine whether to recommend a new clinical trial or treatment method. This paper, "Clinical Outcomes in Fibrolamellar Hepatocellular Carcinoma Treated with Immune Checkpoint Inhibitors," appears in the prestigious journal Cancers. View article

Survival Study

Scientists at New Mexico State University will be examining and quantifying pre-mortality events in hopes of extending survival times.

Hyperammonia and Fibrolamellar Study

Researchers in Brazil and the United States are working together, using Registry data, to analyze how to prevent hyperammonia in patients, which can have dire consequences.