EUROPAC – The European Registry of Hereditary Pancreatic Diseases

The European Registry of Hereditary Pancreatic Diseases (EUROPAC) is open to referrals for people with a family history of pancreatic cancer.

Referrals can be made by any healthcare professional across all health sectors, or by individuals via self-referral.

Background

Around 10% of pancreatic cancers are caused by inherited risk factors. These can occur in families with a history of either pancreatic cancer or hereditary pancreatitis or in people who carry an at-risk genetic mutation.

NICE guidance (NG85) recommends pancreatic cancer surveillance for people with inherited high risk factors.

What is EUROPAC?

EUROPAC is a trial aiming to understand inherited conditions of the pancreas. People with a family history of pancreatic cancer or who have been diagnosed with hereditary pancreatits, can be referred to the study. Those people considered at higher risk of developing pancreatic cancer will be offered secondary cancer screening.

Within the SWAG Cancer Alliance the surveillance centre is:

  • University Hospitals Bristol and Weston NHS Foundation Trust.

Referrals by Health Professionals can be through secondary care, genetic services or primary care.

Who should be referred?

Familial pancreatic cancer:

  • Two or more relatives of first-degree kinship (e.g., sibling, parent and grandparent) affected by pancreatic cancer.
  • Three or more relatives affected by pancreatic cancer (on the same side of the family i.e., maternal, or paternal).
  • Carrier of a known genetic mutation and one family member affected by pancreatic cancer.
  • Carrier of Peutz-Jeghers.

Hereditary Pancreatitis:

  • Families with two or more relatives with idiopathic pancreatitis
  • Families with at least one case of pancreatitis and a confirmed causative mutation in the PRSS1 gene

For further information of those eligible for referral click on the Health Care Professional Information Sheet:

To make a referral, complete the referral form here via the link below and send to our dedicated EUROPAC Navigator Eleri (contact information below).

Self Referrals

The EUROPAC team welcomes self-referrals from individuals concerned about family history.

Individuals can get in touch with EUROPAC through the ‘contact us’ section of the EUROPAC website, emailing europac@liv.ac.uk or calling 0151 795 1256

Participant information sheets can be downloaded below:

For further information and support, here are some useful links:

European Registry of Hereditary Pancreatic Diseases logo

Meet our Region’s Navigator

Eleri Hughes is the first point of contact for both study participants referred to EUROPAC, and all healthcare professionals. Eleri can help provide information on the study, process referrals and provide support for surveillance appointments. Eleri works alongside the regional Hepatobiliary Team at University Hospitals Bristol which has been set up as a EUROPAC surveillance site.

Email: Eleri.Hughes@uhbw.nhs.uk

Eleri SWAG pic v2

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