Healthc
are professionals can now refer people with a family history of pancreatic cancer to the European Registry of Hereditary Pancreatic Diseases (EUROPAC) for annual surveillance.
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.
EUROPAC is a registry for families with histories of familial pancreatic cancer and hereditary pancreatitis. The EUROPAC study also runs surveillance programmes for people with high-risk factors.
The nearest surveillance centres for patients in the Surrey and Sussex Cancer Alliance region are:
- University Hospital Southampton NHS Foundation Trust
- University College London Hospitals NHS Foundation Trust
On this page you will find:
- Information for healthcare professionals about EUROPAC including potential referral routes into the study for eligible patients
- The patient referral form
- An introduction to Beata Gubacsi, the EUROPAC surveillance navigator for the SSCA region
- A guide to who should be referred onto EUROPAC
- Our EUROPAC pancreatic surveillance toolkit
Who should be referred to EUROPAC?
Patients who have:
- Two or more First Degree Relatives with pancreatic cancer e.g. parent and grandparent, parent and sibling, parent and aunt/uncle etc.
- Three or more cases of pancreatic cancer in the family
- One or more cases of pancreatic cancer with an associated syndrome
- Peutz-Jeghers syndrome
- Two or more relatives with idiopathic pancreatitis
- One case of idiopathic pancreatitis
- Family history of pancreatitis and PRSS1
For a full list of referral criteria including genetic mutations and diagnosed genetic conditions, refer to the EUROPAC health professional information leaflet.
Self-referral to EUROPAC
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.
What it means to be on the European Registry of Hereditary Pancreatic Diseases: a patient's story
Kim Kay, 54, is an interior designer and runs a consultancy business with her husband Peter. She has three stepchildren and is a grandmother of two. Kim has recently been referred to EUROPAC for annual surveillance.
She says knowing she has a genetic condition has “put me ahead of the game when it comes to taking control of my health”.
Read Kim’s story here - Kim Kay's story - or listen to her speak at our recent webinar on the inherited risk of pancreatic cancer, chaired by our primary cre lead for Surrey, Dr Cat Hodges.
Listen again to our webinar on inherited risk of pancreatic cancer
Click on the button above to listen to our healthcare professional webinar on the inherited risk of pancreatic cancer and EUROPAC, the European Registry of Hereditary Pancreatic Diseases.
The webinar was held in November 2023. It was chaired by SSCA primary care lead, Dr Cat Hodges, and guests speakers included:
- Emma Hirst-Williams, senior strategy manager, NHS England (listen at: 4:27)
- Professor Chris Halloran, clinical lead, EUROPAC and Annabelle Boughey, operations manager, EUROPAC (listen at 10:06)
- Dr Helen Winter, consultant medical oncologist (HPB and melanoma) and clinical director of SWAG Cancer Alliance (listen at 21:38)
- Peter de Rosa, policy and health improvement manager, Pancreatic Cancer UK (listen at 33.34)
- Kim Kay, EUROPAC patient participant (listen at 37.56)
Meet our region's EUROPAC surveillance navigator
As EUROPAC surveillance navigator, Beata Gubasci is the first point of contact for study participants and healthcare professionals, providing information about the EUROPAC research programme, processing referrals to registration, and support for navigating surveillance appointments.
Beata can be contacted for queries and referrals via the secure NHS email: Beata.Gubacsi@liverpoolft.nhs.uk
Or call her on 0151 794 0717
Click on the button below to find answers to questions from healthcare professionals about inherited risk of pancreatic cancer and referral to EUROPAC.