International Cholangiocarcinoma Patient Registry

Now Open!

The International Cholangiocarcinoma Patient Registry represents a collaborative effort and opportunity, for The Cholangiocarcinoma Foundation, to connect with our larger global patient community to further knowledge of cholangiocarcinoma

The Mission of the International Cholangiocarcinoma Patient Registry is to assist, accelerate and support research into earlier and more comprehensive diagnosis; life-extending therapies and treatments; new and repurposed drug trials; protocols and medications addressing debilitating treatment side-effects; possible end stage complications; and ultimately efforts leading to a cure.

The Vision of the International Cholangiocarcinoma Patient Registry 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.

  • Patients who may be appropriate candidates for studies and/or clinical trials will be contacted by the International Cholangiocarcinoma Patient Registry Coordinator and provided with the contact information. If the patient is interested in participating in the research he or she may then then may contact the study/trial coordinator for more information.
  • Researchers applying to use the encrypted data maintained in the International Cholangiocarcinoma Patient Registry for data analysis, and/or to help identify potentially appropriate patients for clinical trial recruitment, may submit a Letter of Intent (LOI) to the International Cholangiocarcinoma Patient Registry Coordinator for review. The LOI should provide an overview of the proposed research or trial synopsis.

Our Values are centered on patient privacy and our commitment to confidentiality. Participation in the International Cholangiocarcinoma Patient Registry is entirely voluntary. All patient information will be encrypted, de-identifiable, and maintained in a secured database. Participation in any research study and/or clinical trial is also completely voluntary and at the discretion of the patient.

For more information please email: coordinator@cholangiocarcinoma.org or Donna Mayer, Executive Director, at donna.mayer@cholangiocarcinoma.org

 

“In a patient registry, every single person is critical.  The registry provides imperative disease knowledge, which will accelerate the discovery of treatments and ultimately alleviate suffering.  Your story, your experience, and your perspective are all essential pieces of the puzzle.  Participating in a patient registry is the most important contribution you can make!”

—Sharon F. Terry, President and CEO - Genetic Alliance