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The newly formed International Hepatobiliary Cancers Research Consortium convened for the first time at the CanLiv Foundation's Biliary & Gallbladder Research Symposium last month. The consortium's stated aim is to bring together individuals in the field at institutions across the country to work together to pool data, advance research, and improve patient outcomes overall.

The Hepatobiliary Sy... - Click to enlarge in new windowThe Hepatobiliary System

"The consortium members want to work together-they want to go beyond just their own institutional projects. They really are committed to making progress in the tumors," CanLive President Melanie B. Thomas, MD, MS, Associate Director of Clinical Investigations at Hollings Cancer Center at Medical University of South Carolina, said in a phone interview. "The only way to do that is to pool your resources-pool your research ideas, pool patients by pooling their data."


Creating a common tumor registry using the Medidata "Rave" platform is the consortium's first initiative. Several of the hepatobiliary tumors-liver, gallbladder, and bile duct cancers-are common, but not necessarily common in places where research is done.


"That's the first task-and nothing like it exists right now," said Thomas, who will also serve as one of the Consortium's founding board members. "We can get data from patients in Chile and India, where gallbladder cancer is common, analyze it as a group, and really learn a lot."

MELANIE B. THOMAS, M... - Click to enlarge in new windowMELANIE B. THOMAS, MD, MS: "This Consortium has been years in the making. We are thrilled to unite global leaders in the hepatobiliary field to advance knowledge and treatment of hepatobiliary cancers."

The second initiative is to create a biospecimen bank to pool tissue samples and make them available for research. Although plans for the repository have not been finalized, Thomas said the consortium agrees that including genomic deep sequencing is a goal, recognizing the need to understand a given tumor's driver mutation.


The third initiative is to start a grant program to be able to focus and funnel funding for research on these tumors. The group aims to begin issuing these grants by next year.


Currently the consortium is funded by the CanLiv Foundation, mainly through donations from patients and families on an individual basis. But, the hope is to grow the funding portfolio to include industry sponsorship as well as foundation-type grants.


CanLiv will be the consortium's organizational backbone, coordinating all meetings and communications among members. The nonprofit CanLiv was formed in 2007 with a mission of patient education, but since then has expanded to include hosting an annual symposium.