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Fibrolamellar Registry
Fibroregistry
Data Resource:  Fibroregistry
Point of Contact:  
Sanford Simon,  
Project

About This Dataset
The Fibrolamellar Registry allows us to link our community's health data with the scientists, physicians, collaborating hospitals and research institutions around the world studying our disease. Our goal is to spur and speed research, to develop a diagnostic test and, ultimately, effective treatments.
Core Data Elements
Case Sex
Not Reported ()
Case Age At Diagnosis
Pediatric and Young Adult (<40 years) ()
Case Race
Not Reported ()
Case Ethnicity
Not Reported ()
Case Disease Diagnosis
Fibrolamellar Hepatocellular Carcinoma ()
Case Tumor Site
Liver ()
Additional Data Elements
DBGAP STUDY IDENTIFIER
Grant Information
P50CA210964
Mayo Clinic Hepatobiliary SPORE
U54CA243126
Center for therapeutic targeting of the Fusion Oncoprotein of Fibrolamellar Hepatocellular Carcinoma
Published In
https://fibroregistry.org/published-papers/