The Cholangiocarcinoma Foundation 2021 Update

December 2021, Vol 2, No 4

Stacie Lindsey, Founder and CEO, Cholangiocarcinoma Foundation (CCF), delivered a Keynote Address during the 3rd Annual CCA Summit that centered on the need to work together and to focus on the patient in the development of platform studies for patients with cholangiocarcinoma (CCA) and the subsequent analysis of data. Ms Lindsey provided updates regarding the activities of CCF and recent and future activities.

Despite the COVID-19 pandemic, she said, 3 targeted agents for CCA have been approved by the FDA in the past 2 years, and more collaborations and conversations occurred because people were working at home. Consensus terms have been adopted for testing in precision medicine, including biomarker testing, and genomic testing for genetic mutations and the associated risk for CCA subtypes.

According to Ms Lindsey, approximately 50% of patients report that they do not know what type of CCA they have.

After 6 weeks of starting the Newly Diagnosed/Newly Connected program, nearly 300 patients entered this portal, with only 18 reporting that they heard about CCF through physician referral, and more than 60% open the e-mails, Ms Lindsey said.

In the past 18 months, 1099 registered attendees have attended CCF-organized 18 webinars, generating more than 3000 views. In addition, patient and caregiver support groups have been attended by approximately 250 patients and 200 caregivers.

A nutrition resource is in development, produced by CCF in partnership with Oncology Dietician Practice Group, which provides helpful tips, information, and guidance with meal plans and recipes specifically for the CCA community.

New materials and webinars are forthcoming to discuss the new International Classification of Diseases, version 11 (ICD-11) diagnosis codes for intrahepatic CCA (2C12.10), extrahepatic CCA (2C15.0), and hilar CCA (2C18.0).

The 2022 Cholangiocarcinoma Foundation Annual Conference will be held February 23-25, 2022, in Salt Lake City, UT.

This is the 15th anniversary of CCF. Its core values are patients first, collaboration, innovation, and urgency, Ms Lindsey said. Anyone who shares these values should work together to reinvigorate efforts for platform trials.

“We have to figure this out, and we have to figure it out together,” Ms Lindsey concluded. “I’m really grateful to be here and to be in this community of people who care so much about the patients; they really have to come first.”

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