International Fibrolamellar Cancer Registry: Opportunities and Challenges

FLC is a rare disease affecting a young demographic with no standard-of-care therapy.Registries represent an important way of addressing some of these challenges and represent an opportunity to better understand rare diseases and advance knowledge.This FLC registry, despite unique collaborations with academia, technology, and advocacy, was unsuccessful and terminated early because of low enrollment without new insights into FLC.Unifying efforts and collaborations can help overcome the current challenges and accelerate the buildup of resources for research and practice improvement for the rare FLC.This is an invitation to all stakeholders involved in FLC for collaboration to generate a successful and valuable tool for improving the management of patients with FLC.