New Study to Focus on Unmet Needs of Liver Cancer Patients

September 9, 2019

The study will examine care options, quality of life and other issues impacting patients

PHILADELPHIA, PA– (Sept. 9, 2019) –The Cancer Support Community (CSC), a global nonprofit, is expanding its innovative patient experience work by launching a new research study to capture the patient experience of those diagnosed with liver cancer.

“Liver cancer is a critical illness that often has unique challenges,” said Linda House, president of the Cancer Support Community, whose Philadelphia-based Research and Training Institute will oversee the study. “Because there is so little research around liver cancer, this new initiative will help us better understand how health care providers can solve the unmet needs of people living with liver cancer around topics like broad cancer care, quality of life, and managing other chronic diseases in addition to their cancer.”

The Cancer Experience Registry: Liver Cancer will explore the patient experience on several different topics such as their physical functioning, social life, work, stress, financial impact, treatment decision-making, and more. After completing the survey, participants will be connected to support and resources that meet their unique needs and have the option to receive additional information from CSC and its health care partners.

First launched in 2013, The Cancer Experience Registry has captured important information about the physical, social, and emotional health from more than 14,000 patients, survivors, and caregivers. The Cancer Experience Registry: Liver Cancer is the 13th in a series of specialty cancer registries hosted by CSC. It was created thanks to support from Genentech, a member of the Roche Group.

CSC is grateful for the work of The Bili Project Foundation, Blue Faery: The Adrienne Wilson Liver Cancer Association, and the Global Liver Institute, who have partnered to help with this project.

Patients and caregivers can access the registry and share their story by creating an account at