Coming Soon… The CCF Patient Registry – Helping Others, We need your help!

Posted by on Jan 30, 2014 in Uncategorized | 2 comments

We are pleased to announce the upcoming launch of
The Cholangiocarcinoma Foundation (CCF) Patient Registry.
http://registry.cholangiocarcinoma.org

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 kim.crittenden@cholangiocarcinoma.org for more information

2 Comments

  1. Congratulations on thie launch of this registry. Thank you and much success in this endeavor! Someone on the cc blog already started collecting this kind of info. Will info already provided on discussion blog be transferred or does everyone have to register from scratch?
    Sara Denn

    • Hi Sara, thanks for your support. We need volunteers and advocates to register their data directly into the Registry. If you have any further questions, please contact our new Executive Director, Donna Mayer donna.mayer@cholangiocarcinoma.org

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