A screening study to learn more about the genetic causes of pancreatic cancer in people with familial pancreatic cancer and hereditary pancreatitis (inflammation of the pancreas)
Why is this study being carried out?
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 is the study suitable for?
Familial pancreatic cancer registry
People from families with familial pancreatic cancer can join this study. You may be able take part if:
- two or more first-degree relatives (parent, brother, sister or child) on your side of the family have pancreatic cancer
- you have three or more relatives with pancreatic cancer on the same side of the family
- your family has a known family cancer syndrome and at least one family member has had pancreatic cancer – and this person has a faulty gene.
What does screening in the EUROPAC familial pancreatic cancer registry 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 screened you could be offered:
- a CT (computed tomography) scan
- an EUS (endoscopic ultrasound)
- a blood test to check for the CA19-9 tumour marker (a chemical substance produced by pancreatic cancers that shows up in the bloodstream)
- a blood test to check the level of sugar in your blood.
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 registry
The hereditary pancreatitis registry 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 you can join the EUROPAC study by:
- completing questionnaires
- giving 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.
Recruitment start date: 30 October 2007
Recruitment end date: 01 July 2039
The EUROPAC trial is being carried out at:
- Royal Liverpool Hospital, Liverpool
- Freeman Hospital in Newcastle
- University College London Hospital, London
- University Hospital Southampton, Southampton
- Glasgow Royal Infirmary, Glasgow
- Nottingham Queens Medical Centre, Nottingham
- St James’s University Hospital, Leeds
- North Bristol NHS Trust, Bristol
- Morriston Hospital, Swansea
Professor Christopher Halloran
Anyone interested in taking part in the EUROPAC study can contact the trial via the EUROPAC website: europactrial.com
You can also ask your GP or specialist to refer you. You have to be referred to take part in the secondary screening study.
How to join a study
Please speak to your GP or consultant about whether this study is suitable for you.
If you have any questions about pancreatic cancer you can speak to one of our specialist nurses on freephone 0808 801 0707.
How to find out more
For further information about this study please visit the EUROPAC website.
For references used to develop this information please email us.