We are pleased to announce the upcoming launch of
The Cholangiocarcinoma Foundation (CCF) Patient Registry.
What is a Patient Registry?
A Patient Registry is a secure database of specific and relevant health information entered by participants.
“Creating a registry of patient is the single most valuable action a rare disease community can take. The registry provides critical knowledge which make that disease easier to study, increasing the probability a treatment can be developed.”
–David Meeker; President and CEO of Genzyme
Who can participate?
• a 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…
Join The CCF Patient Registry and help extend The Cholangiocarcinoma Foundation’s global reach by creating the only database of patient health information related solely to the diagnosis and treatment of cholangiocarcinoma.
The Mission of The CCF 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 CCF Registry Database is to collect patient information about the incidence and prevalence of cholangiocarcinoma and related disorders. The CCF Registry will also assist in the screening of appropriate participants for research studies and clinical trials.
What can I do now to prepare?
Gather your health records, test results and information about your family’s health history. Signup here to receive notices and updates about the CCF Patient Registry.
Please contact firstname.lastname@example.org for more information