PATIENTS & CAREGIVERS
Join the ICPR
International Cholangiocarcinoma Patient Registry (ICPR)
The International Cholangiocarcinoma Patient Registry (ICPR) unites patients and the global research community. By contributing your health records, you become a part of research initiatives, hastening progress in the fight against cholangiocarcinoma. Personally identifiable information is removed, and the medical data is used to better understand cholangiocarcinoma, benefiting those living with it today and continuing to develop targeted diagnostics and treatments.
As a unified community, we provide hope in research, driving significant advancements in understanding and treating this disease. Join more than 2,000 individuals affected by cholangiocarcinoma in this pivotal mission and experience the strength found in a shared community.
Citizen Health is our trusted partner in this initiative. Users will be directed to the Citizen Health portal when they click the register button. This partnership and patient collaboration are central to our community-powered research.
Patients and caregivers can get started on the Citizen Health portal here.
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
- At this time we cannot support record collection outside of the U.S.
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 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.”
“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 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!”
The International Cholangiocarcinoma Patient Registry is powered by Invitae Ciitizen