What is the EUROPAC study about?

Pancreatic cancer can sometimes run in families, where a small number of rare genetic conditions are linked to a higher risk of pancreatic cancer. The European Registry of Hereditary Pancreatitis and Familial Pancreatic Cancer (EUROPAC) is an organisation involved in researching pancreatic cancer.

There are two separate studies. One is looking at pancreatic cancer that runs in families (familial pancreatic cancer). The other is looking at hereditary pancreatitis.

Researchers hope to learn more about the genetic causes of pancreatic cancer. Being able to identify people at high risk of pancreatic cancer may also help researchers to develop new screening programmes to detect pancreatic cancer at an early stage.

Who can take part?

You may be able to take part in the familial pancreatic cancer study if you have:

  • a family history of pancreatic cancer (two or more affected close relatives on the same side of your family)
  • a mutation in a gene known to increase your risk of pancreatic cancer and have at least one case of pancreatic cancer in the family
  • been diagnosed with Peutz-Jeghers Syndrome.

If I take part, what will it involve?

The EUROPAC team will start by assessing your health and your family history through detailed questionnaires. If this shows that the study is suitable for you, you can then decide if you want to take part.

Everyone is considered individually, but if you are monitored you could be offered:

Screening usually starts from the age of 40, sometimes earlier.

If the tests suggest a possible problem, you may be offered continued monitoring or more tests to confirm the findings. You may be offered an operation if a growth is found that could be removed.

Hereditary pancreatitis study

The hereditary pancreatitis study aims to learn more about hereditary pancreatitis. Pancreatitis is the inflammation of the pancreas. In rare cases, pancreatitis can run in the family and this can increase the risk of developing pancreatic cancer.

If you have hereditary pancreatitis and you want to take part in the EUROPAC study, you will be asked to complete questionnaires and give a blood sample. The blood is taken after talking to an expert in pancreatic diseases and sometimes a geneticist (a specialist in genes) for genetic counselling. The blood may be tested for faults in genes known to cause pancreatic disease.

Find out more

If you would like to take part or find out more, speak to your medical team or visit the EUROPAC website.

If you have any questions about pancreatic cancer, you can speak to our specialist nurses.

We need your help!

We are currently reviewing our support service offering, and exploring how we might reach more people, in a more impactful way, with our support.

To make sure we make informed, patient-led decisions, we want to understand the experiences and opinions of pancreatic cancer patients and their families. 

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