Benefits of Participation

Benefits for Patients & Caregivers

  • Store your medical records in one, easily accessible location
  • Share your health records with one simple link
    • Get second opinions
    • Access a personalized clinical trial report
    • Collaborate with your medical team
    • Coordinate with your caregivers

Accelerate Research

  • Engage in research by allowing your records to be included in the ICPR
  • Advance understanding of cholangiocarcinoma
  • Accelerate discovery of new treatment options for patients

Patient registries are critical to developing new medical treatments. By sharing your or your loved one’s de-identified medical data, you may be able to help researchers:

  • Develop new targeted therapies
  • Design better clinical trials
  • Understand how the disease changes over time
  • Use data (instead of actual patients) in clinical trials

To onboard a posthumous patient you will need a death certificate as part of the required legal documentation.

  • Empower global research
  • Improve the lives of cholangiocarcinoma patients worldwide
  • Provide clinically validated data for researchers to develop therapies and treatment options

ICPR is open to international patients & caregivers:

  • Patients & caregivers can directly upload their clinical records into their secure digital profile
    • At this time we cannot support record collection outside of the U.S.
      • International patients and caregivers should still create their digital profile and can add their medical records directly

How Registration Works

Click on “Register Now”

Read and provide your consent to join

Create your free profile

Confirm your diagnosis and your provider(s)

Upload your photo ID to verify your identity for your healthcare provider

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 registration.

“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

“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

“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

The International Cholangiocarcinoma Patient Registry is powered by Invitae Ciitizen