STAKEHOLDERS MEETING

The inaugural Cholangiocarcinoma Foundation Stakeholders Meeting was held February 27-28, 2014 in Salt Lake City, Utah in collaboration with the Hepatobiliary Cancer Research Program at Huntsman Cancer Institute, the University of Utah, Target Cancer, and The Bili Project. The event was attended by 56 physicians and researchers from 27 US and international cancer centers. Sessions focused on the latest updates, research, current data and treatment options for cholangiocarcinoma. Outcomes included the following:

Cross-Institutional Collaborations

Nine Working Groups were formed, based on shared research interests, to work cross-institutionally on basic, translational and clinical outcomes throughout the year. Working Groups were encouraged to submit cross-institutional proposals for innovative cholangiocarcinoma-related research. CCF will fund these proposals upon approval from the Advisory Boards. This research initiative is a collaboration between Mayo Clinic, MD Anderson, Sloan Kettering and the Cholangiocarcinoma Foundation to learn about the genetic basis for cholangiocarcinoma. It was designed at the inaugural Cholangiocarcinoma Foundation Stakeholders Meeting held in February 2014 in Salt Lake City, Utah and immediately launched in response to the death of Christopher Wilke, (age 12) who was the first patient on record at Children’s Hospital Los Angeles and among the youngest patients ever to be diagnosed with cholangiocarcinoma. The purpose of the study is to identify cancer causing genes in patients under 50 years old who have been diagnosed with cholangiocarcinoma OR families where multiple members have been affected by this rare disease.

Biliary Emergency Information Card

All patients with cholangiocarcinoma are at risk for a serious complication called ascending cholangitis; a bacterial infection of the biliary system. Renuka Iyer, M.D., a medical oncologist at Roswell Park Cancer Institute in Buffalo, N.Y., recognized the need to educate patients with cholangiocarcinoma about this urgent condition and its symptoms, and also to ensure that the patient’s health care professionals had accurate information to diagnose and treat this potentially fatal complication. Dr. Iyer proposed a solution to the Board of Directors at the stakeholder meeting and the Biliary Emergency Information Card is the result of this meeting.

Cholangiocarcinoma in the Young (CITY)

Patients can quickly and easily complete a free, online form that populates the Biliary Emergency Information Card with patient information for their specific cholangiocarcinoma treatment and their health care providers’ contact information. The patients can print and fold the card so it is accessible at all times. Instructions on the card include specific emergency treatment guidelines. Medical personnel can visit curecc.org/biliarycard or scan a QR code for additional instructions on symptoms, signs, labs, workup, treatment and follow-up for the patient. Learn more here.

Save the Date

The 2015 Cholangiocarcinoma Foundation Annual Conference will build upon the foundation of knowledge exchange and collaboration among key opinion leaders and other professionals in the medical and scientific communities. Throughout the program, attendees will be provided opportunities to create synergies, promote dialogue, foster innovation, and share expertise with colleagues worldwide.

February 5-6, 2015 Salt Lake City, Utah.