Patients, Caregivers Share Why They Participated in ICPR

Cholangiocarcinoma patients are eager to contribute to science and accelerate research because of this newly approved FDA process and share their experience enrolling in the International Cholangiocarcinoma Patient Registry (ICPR).

The following testimonials from four patients and one caregiver refer to their experiences enrolling for ICPR and receiving emails/phone calls about the free regisration.

“One of the most bewildering things about being diagnosed with cholangiocarcinoma is that what causes it is still not fully understood. I’m grateful to the Cholangiocarcinoma Foundation and Invitae Ciitizen for creating the International Cholangiocarcinoma Patient Registry (ICPR) and collecting data on TODAY’S patients so that, hopefully, one day soon, we will have much better information about risk factors, treatment effectiveness, and evolutionary patterns amongst the subtypes of cholangiocarcinoma in TOMORROW’S patients.

“We may someday be able to improve early detection, expose any potential geographical hotspots, and understand more reliably which mutations might predispose an individual to bile duct cancer. Another added benefit is that the data collected may be helpful in the design of new, potentially life-extending clinical trials. So, there’s really no downside to joining the registry!

“My family and I are incredibly grateful for ALL of the wonderful work that the Cholangiocarcinoma Foundation, Invitae Ciitizen are doing for us, but PARTICULARLY in broadening the database and increasing our understanding of this horrible, relentless cancer. Please consider joining us in the registry today!”

~ Kirsten Chepeus, Stage III intrahepatic cholangiocarcinoma

“I must admit that at first, I was a little hesitant as I know how hard it is to hear the news of the diagnosis – cholangiocarcinoma. The reason to do it, though, is to help others-especially those who are newly diagnosed. I could relate to the feeling of being overwhelmed, where to go, how to proceed with treatment, and the initial confusion inside your head. After the first call, though, I felt I was helping, in some cases providing a listening ear or sharing Fred’s journey with mine from a caregiver’s perspective.”

~ Jill Neubauer, wife of CCA survivor, Fred Neubauer

“Now, CCF and global partners are making our family much larger with the advent of the ICPR. Strength in patient numbers, data, and global treatment knowledge offer all of us hope; hope could advance early detection, new treatment opportunities through global clinical trials, and quality of life-extending treatment opportunities.”

~ Fred Neubauer, a Stage IV CCA patient since 2019

“Being in the registry means I can pay it forward – perhaps helping patients in the future. Plus, Ciitizen found a clinical trial that added a year to my life!”

~ Lynnette McMahon, cholangiocarcinoma survivor
After his sister’s death, tech entrepreneur works to help patients communicate their health history

“I participated in the patient registry because it helps to make me feel that when I need to find a clinical trial, I will be ready. All my records are in one place, a profile is written, and a computer match can be done. Feeling in control of some part of this journey is empowering!”

~ Marybeth Hanasewych, CCA survivor