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What is familial How can I become involved in these studies? Some families have multiple relatives affected by pancreatic cancer, often over a few generations. Individuals with two or more close relatives with pancreatic cancer may be at a higher risk of developing pancreatic cancer. If you would like more information on pancreatic cancer or would like to get involved in these studies, you can visit our website Affected male Affected female Non-affected male www.pancreaticcancer.net.au seem to run in some families? Alternatively, you can contact the AFPaCC Clinical Research Coordinator on (02) 9355 5813 or email [email protected] Does this increase my chances of Non-affected female Some families also carry known cancer genes, such as BRCA2, which are thought to play a role in pancreatic cancer. Individuals with inherited syndromes such as Peutz-Jeghers and Hereditary Pancreatitis are also considered to be at an increased risk of developing pancreatic cancer. APGI Australian Pancreatic Cancer Genome Initiative There are still so many questions surrounding pancreatic cancer. If you are concerned about your family history, this brochure will provide information on “inherited” aspects of the disease, and guide you to current research projects in Australia. What do we know about Pancreatic cancer is one of the most lethal and devastating human cancers. It is usually diagnosed when the cancer is quite advanced, due to the lack of symptoms and location of the pancreas deep within the abdomen. More than 2100 people are diagnosed with pancreatic cancer each year, and 2000 people die from it (Cancer in Australia: an overview, 2008). Pancreatic cancer is a genetic disease, meaning it is caused by changes in our DNA. The majority of cases are “sporadic” with changes to the DNA occuring over a lifetime. However, 5-10% of cases are considered to be familial, indicating genetic faults may have been inherited. It is this relatively small group of people who may be at a higher risk of developing pancreatic cancer, and in turn hold the key to valuable genetic information. What research is being done Australian Familial Pancreatic Cancer Cohort (AFPaCC) is a national study that is carried out at the Garvan Institute of Medical Research and the Kinghorn Cancer Centre in Sydney. Both men and women, with or without cancer, are invited to join this study if they are: From a family who have undergone genetic testing, and are known to carry a From a family where gene mutation thought to one or more close be involved in pancreatic relatives have been cancer (e.g. BRCA2) diagnosed with pancreatic cancer Participants will be asked to complete a questionnaire on family health, in order to create a registry of individuals and families who are considered to be at an increased risk of pancreatic cancer. High-risk candidates may be asked to provide a blood sample to for genetic studies. This will enable further investigations into the few genes with a known association to pancreatic cancer, and potentially discover more. AFPaCC aims to: • Understand the risk in families with a history of pancreatic cancer • Discover genetic and non-genetic causes of pancreatic cancer • Improve early detection of pancreatic cancer in high risk individuals Accumulating data has shown that early detection and treatment of pancreatic cancer greatly improves the outcome. A screening trial at Sydney’s St Vincent’s Hospital is currently underway, in collaboration with the Garvan Institute of Medical Research. The aim of this study is to identify and screen high-risk individuals using endoscopic ultrasound (EUS), an excellent tool in assessing small changes to the pancreas. Who is eligible? • People with at least two close relatives known to have pancreatic cancer • People who carry a BRCA2 gene and have a family history of pancreatic cancer • People with Peutz-Jeghers Syndrome • People with Hereditary Pancreatitis What does the study involve? Questionnaire Genetic Counselling EUS + blood test NORMAL Yearly EUS ABNORMAL Close surveillance or surgery