What is a Patient Registry?
A Patient Registry is a secure database of specific and relevant health information entered by participants.
Who can participate?
- Any person who has been diagnosed with Cholangiocarcinoma (current patient or survivor)
- A family member (spouse, child, or sibling) who has permission to enter health information about a person who has been diagnosed with Cholangiocarcinoma (including patients who have passed away)
We need your help…
By joining The International Cholangiocarcinoma Patient Registry you are helping to create the only database of patient health information related solely to the diagnosis and treatment of cholangiocarcinoma.
The Mission of The The International Cholangiocarcinoma Patient Registry is to assist, accelerate and support research into:
- Earlier and more comprehensive diagnosis
- Life-extending therapies and treatments
- New clinical and repurposed drug trials
- Better symptom and side-effect management
- Efforts that ultimately leading to a cure
The Vision of The International Cholangiocarcinoma Patient Registry Database is to collect patient information about the incidence and prevalence of cholangiocarcinoma and related disorders. The International Cholangiocarcinoma Patient Registry will also assist in the screening of appropriate participants for research studies and clinical trials.