Australian Familial Pancreatic Cancer Cohort

The Australian Familial Pancreatic Cancer Cohort (AFPaCC) is a registry for individuals or families who have multiple relatives affected by pancreatic cancer. It is estimated that 5-10% of all pancreatic cancers are hereditary.

Can pancreatic cancer run in families?

The majority of pancreatic cancer cases are considered to be random, or ‘sporadic’ occurrences. However, having a family history of pancreatic cancer is one of the few known risk factors. It is estimated that 5-10% of all cases of pancreatic cancer are hereditary, or ‘familial’. This suggests that some families carry a genetic predisposition to developing the disease. Although a number of susceptibility genes have been identified, the majority of genes responsible for familial pancreatic cancer remain unknown.

Having a family history of pancreatic cancer, or carrying a known susceptibility gene (e.g. BRCA2) can increase the chances of developing pancreatic cancer. If you are concerned about your risks, talk to your GP about obtaining a referral to your local Family Cancer Clinic.

What is AFPaCC?

AFPaCC is a registry for if individuals or families with a history of pancreatic cancer. AFPaCC was launched in 2011 with the support of a Cancer Institute NSW Translational Health Services Research Grant. AFPaCC targets the relatively small number of families who may be at an increased risk of developing pancreatic cancer. Collating family history and environmental data helps to further define risks for unaffected family members, and also identify individuals eligible for a pancreatic cancer screening trial.  Collecting blood samples from family members and archival cancer tissue from affected relatives provides a valuable resource for genetic investigations into the inherited changes driving familial pancreatic cancer.

What are the goals of AFPaCC?

    • Further understand pancreatic cancer risks in Australian families
    • Identify genetic and non-genetic causes of pancreatic cancer
    • Identify high risk individuals eligible for pancreatic cancer screening trials

Who can join AFPaCC?

Both men and women, with or without cancer and over the age of 18yrs, are invited to join this study if they are from a family:

    • With multiple relatives on the same side diagnosed with pancreatic cancer
    • Known to carry a gene mutation thought to be involved in pancreatic cancer (e.g. BRCA2)
    • With a diagnosis of Peutz-Jeghers Syndrome or Hereditary Pancreatitis
    • With one relative diagnosed with pancreatic cancer, and a strong family history of other cancers on the same side.

What does AFPaCC participation involve?

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. The AFPaCC clinical coordinator will then contact you to discuss your eligibility.

If you are eligible and decide to participate, you will be asked to:

    • Provide consent, which includes access to relevant medical records and archival tissue
    • Complete a 30 minute questionnaire detailing personal health and family history
    • Discuss the study with other family members, who may also be interested in participating

Some AFPaCC participants may also be asked if they are willing to:

    • Provide a blood sample for the purpose of genetic studies
    • Provide confirmation of diagnoses in affected relatives (if possible) or permission to access relevant medical records of deceased relatives
    • Participate in a pancreatic cancer screening trial

AFPaCC Progress

As of March 2016, AFPaCC has enrolled 271 individuals, representing 171 different Australian families. The pancreatic cancer diagnosis in at least one family member has been confirmed for almost 40% of families. A blood or archival tissue samples for affected relatives has been sourced for nearly 30% of AFPaCC families. Diagnosis confirmation and sample acquisition are important and ongoing AFPaCC processes.

It is important to keep the AFPaCC registry as accurate and up to date as possible. If you are already a participant, and have new and relevant information about yourself or family, please contact the AFPaCC coordinator.