The Italian Cholangiocarcinoma Patient Registry is a collaborative effort promoting opportunities to increase our knowledge of cholangiocarcinoma.

The goal of our organization is to assist, accelerate and support research on biliary tract cancers to achieve an earlier and more exhaustive diagnosis; develop life-extending therapies and treatments, test new drugs, monitor debilitating side effects, and examine possible complications; and ultimately, find a cure. We aim to collect information on biliary tract cancer patients concerning the incidence and prevalence of side effects in the treatment of cholangiocarcinoma. We may use the registry to select appropriate patients for research and clinical trials. Selected patients will be told, if they are interested, how to get more information.
 

Researchers interested in analyzing the encrypted data held in the registry in order to identify patients who are potentially suitable for inclusion in a clinical trial should submit a “Letter of Intent” to present the proposed research or trial.
 

Our ethos as an organization is centered on patient privacy, and we guarantee confidentiality. Participation in the Cholangiocarcinoma Patient Registry is entirely voluntary. All patient information will be encrypted, de-identifiable, and stored in a secure database. Participation in any research study or clinical trial is voluntary and at the discretion of the patient.