Australian Familial Pancreatic Cancer Cohort
Pancreatic cancer has a tendency to run in families
It is estimated that 5-10% of all cases of pancreatic cancer are hereditary. This means that some relatives of patients diagnosed with pancreatic cancer may have an increased risk to developing pancreatic cancer compared to the general population. Screening for pancreatic cancer may be beneficial to these ‘high risk’ families, as we know early detection and treatment of the disease drastically improves the 5-year survival rate to a near 100%, while it is currently around 6%.

The AFPaCC is a registry for hereditary pancreatic cancer
We are working to define a group of individuals and families who are considered to be at high risk of developing pancreatic cancer. From here, individuals may be identified as eligible for genetic testing and/or screening programs. The registry will produce valuable clinico-pathological data and link it to the genetic information, so that we can understand more about how pancreatic cancer is inherited and improve current screening and treatment options.
What are the goals of the AFPaCC?
- Understand the risk of the pancreatic cancer in families
- Facilitate the early detection of the pancreatic cancer
- Identify genetic and non-genetic causes of pancreatic cancer
Who can join the AFPaCC?
Both men and women, with or without cancer, are invited to join this study if they are:
- From a family where one or more close relatives on the same side diagnosed with pancreatic cancer
- From a family who have undergone genetic testing, and are known to carry a gene mutation thought to be involved in pancreatic cancer (e.g. BRCA2).
How do I sign up for the AFPaCC?
It is easy to join the registry. The first step is to fill out the online request form with some brief details about yourself and your family history of pancreatic cancer. The clinical coordinator will then contact you to discuss your eligibility for the AFPaCC. To be involved in the project, we will ask you to fill out a consent form and a comprehensive questionnaire. A blood sample may also be required for some individuals.

