Webinar: Update on the IHNB

Topic: “Update on Cholangiocarcinoma: What we have learned from the International Hepatobiliary Neoplasia Biorepository”
Date: Monday, July 14, 2014
Time: 4:00 – 5:00 PM (Eastern)
Presenter: Dr. Roongruedee Chaiteerakij, Mayo Clinic, MN
Purpose: Educate patients so they better understand how Mayo Clinic is using the information and bio-specimens they provide to improve care all for cholangiocarcinoma patients.
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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.

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.

What will you do next?

To participate in this important research or for additional information…

 

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