2013 Annual Report

International Cholangiocarcinoma Patient Registry

_LOGO-RegistryPatients, Researchers, Industry and Leading Medical Experts Join Forces to Accelerate Cholangiocarcinoma Research

The Cholangiocarcinoma Foundation partnered with Patient Crossroads to launch the first-ever patient registry designed specifically for people with cholangiocarcinoma (bile duct cancer).

The International Cholangiocarcinoma Patient Registry (ICPR) is a patient-centered database designed to collect relevant clinical and scientific information about people with cholangiocarcinoma. Patients, caregivers, and family members can record and update personal disease characteristics in a private, secure online profile. Entries will capture stage, treatments, test results, side effects, and treatment responses. All data will be made available in de-identified form, giving doctors, researchers, and patients themselves an unprecedented resource to determine the best approaches to care, according to each patient’s unique clinical history.

Patients will be encouraged to be active contributors in the mission to find a cure for Cholangiocarcinoma.  By opting-in, patients will participate in their own healthcare by supplying researchers with the most up-to-date data possible. The more data the registry collects, the more efficiently researchers will be able to focus their endeavors to speed progress towards a greater understanding of cholangiocarcinoma and lead to improved diagnostic and therapeutic options and ultimately a cure.

 

✓ Specific and relevant health information entered by participants into a secure database

✓ Any person 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)

“For a small investment of time, patients can provide a wealth of knowledge to researchers.  The ICPR will empower patients and families to improve their own health outcomes and help make a difference that can be felt around the world.”

Stacie Lindsey, Cholangiocarcinoma Foundation President & Founder