You can help further medical research!

There is a CRITICAL need for patients with cholangiocarcinoma (bile duct cancer) to participate in research studies. It’s a very simple process.

How will you participate?

  • Fill out a family history and risk factor questionnaire.
  • Complete forms for release of your health records and consent to allow sharing of information with other research institutions.
  • Donate a sample of blood; approximately 3½ tablespoons or 45 mL.
  • If you have a biopsy or surgery as part of regular medical care, allow the investigator to obtain a small specimen of tissue for research use.

Your FAMILY MEMBERS can also participate in this important research if you have cholangiocarcinoma (bile duct cancer) AND:

    • you are under the age of 50, OR
    • another member of your immediate or extended family has also been diagnosed with Cholangiocarcinoma, OR
    • multiple members of your immediate or extended family have been diagnosed with other kinds of cancer OR
    • you have a history of choledochal cysts

Your participation in this important research is critical and your family members can help. Here’s why:

  • Cancer is a disease of a disordered genome, which usually occurs from the accumulation of mutations over time, which is why it usually occurs in older people above the age of 60.
  • When cancer develops in a young person it is often because they are already carrying a mutation in their DNA that substantially increases their risk of cancer and shortens the time to cancer development.
  • The same mutations that predispose a young person to a particular kind of cancer will often cause the same kind of cancer in an older person.
  • If there are multiple people who develop cancer in a family, we can use genetic testing to determine if a particular genetic variation is present only in those family members with cancer.
  • The ability to track cancer in families is a very powerful tool that has resulted in the identification of several important cancer causing genes.

Individuals with or who have a history of choledochal cysts should participate because:

  • Choledochal cysts are associated with a very high risk of development of cholangiocarcinoma.
  • In some patients, choledochal cysts are familial, suggesting that there is an inherited genetic component to the development of choledochal cysts.
  • Genetic testing may help us to identify the gene variants that are associated with development of choledochal cysts.
  • It is possible that this testing may lead us to identify specific target proteins and treatments to reduce the risk of cancer in individuals with choledochal cysts.
  • The risk of cholangiocarcinoma decreases if a choledochal cyst is surgically resected.
  • Blood samples from persons with any personal or family history of choledochal cysts, even if the cyst was previously resected, will further our research efforts.

What will you do next?

To participate in this important research or for additional information…

Please fill out this form.