Connecting Patients, Accelerating Cures
Join the International Cholangiocarcinoma Patient Registry (ICPR)
Connecting Patients, Accelerating Cures
The ICPR empowers patients and caregivers by uniting the global cholangiocarcinoma research community. By enrolling, you can:
- Contribute to research effortlessly: Enroll and share your health records to help accelerate the discovery of cures from the comfort of your home.
- Keep all your medical records in one place. You can easily access and share your records with anyone you choose, including providers for second opinions.
- Accelerate progress: Your medical data—securely de-identified—will be used to enhance our understanding of cholangiocarcinoma and advance targeted diagnostics and treatments.
Why Join?
- Become part of research initiatives that drive breakthroughs in the fight against cholangiocarcinoma.
- Strength in numbers: Join a growing community of individuals affected by cholangiocarcinoma, providing collective hope through shared efforts.
- Enable cutting-edge research and better treatment options for those living with the disease today and in the future.
How It Works
- Patients and caregivers will be directed to the Citizen Health portal when registering.
- No extra work is needed—once enrolled, your records do the job, making this a low-effort way to contribute to transformative research.
Join today and be part of a mission to connect patients and accelerate cures.
Patients and caregivers can get started on the Citizen Health portal below:
How Registration Works
1.
Click on “Register Now”
2.
Read and provide your consent to join
3.
Create your free profile
4.
Confirm your diagnosis and your provider(s)
5.
Upload your photo ID to verify your identity for your healthcare provider
Patients, Caregivers Share Why They Participate in ICPR
Patients are eager to contribute to science and accelerate cures 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.
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.
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 Citizen for creating the International Cholangiocarcinoma Patient Registry and collecting data on patients so that one day soon, we will have much better information about risk factors, treatment effectiveness, and evolutionary patterns amongst the subtypes of cholangiocarcinoma. 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, Citizen 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!