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.

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. 

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.

Survival Study

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

Your Study Here

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