Families who have been affected by pancreatic cancer can assess their risk of inheriting the disease through a new first-of-its-kind online tool, created by Pancreatic Cancer UK and supported by NHS England.
Pancreatic cancer is incredibly challenging to diagnose at an early stage, leading to poor survival rates. The Family History Checker will help to identify people with inherited risk of the disease and refer them for regular monitoring - giving them the very best chance of being diagnosed early.
NHS England supported the development of the Family History Checker, investing £100,000. The objective is to improve rates of earlier diagnosis by raising awareness of inherited risk and to help signpost eligible people to a University of Liverpool-led surveillance programme - The European Registry of Hereditary Pancreatitis and Familial Pancreatic Cancer [EUROPAC].
Of the 10,500 people diagnosed with pancreatic cancer in the UK each year, around one in 10 cases are inherited. Pancreatic cancer has the lowest survival rate of all common cancers, with more than half of people dying within three months of diagnosis. It is difficult to detect at an early stage due to limited diagnostic tests and many of the symptoms being common to other conditions, for example back and stomach pain, indigestion and unexpected weight loss. As a result, 80 per cent of people with pancreatic cancer are not being diagnosed until later stages when curative treatment may not be possible.
The new Family History Checker will empower members of the public to assess if they have an inherited risk of pancreatic cancer.
Those completing the Family History Checker will be asked three simple questions covering: their family history of pancreatic cancer, other genetic conditions associated with the disease and hereditary pancreatitis. Answers from these will help to identify who should be referred onwards for further risk assessment through a research study known as EUROPAC. EUROPAC, which began in 1997 and is funded by Pancreatic Cancer UK, maintains a registry of people with a family history of pancreatic cancer, as well as people who have been diagnosed with hereditary pancreatitis.
The University of Liverpool's Professor Chris Halloran said: "EUROPAC is delighted to partner with NHSE and Pancreatic Cancer UK, who we have closely worked with for many years, in developing the Family History Checker. This amazing tool allows any person, anywhere, to check their risk and if appropriate be referred onward to EUROPAC to start registration, risk scoring and eventual screening within the NHS."
People referred from the Family History Checker will be asked to provide more information about their family history by the EUROPAC team. Each case is then reviewed to identify those who should be invited to receive annual monitoring, where they will be given regular blood tests and scans. This will ensure changes to the pancreas can be spotted earlier, giving people the very best chance of having lifesaving treatment if they do develop pancreatic cancer.
Crucially, the vast majority of people won't have increased inherited risk and will be able to receive reassurance for the first time. The Family History Checker will signpost those with no increased inherited risk to symptoms information to be aware of, and details of the Pancreatic Cancer UK Support Line.
To meet criteria for inherited risk, a person could have:
- more than one relative with pancreatic cancer on the same side of the family
- a family with a genetic condition linked to pancreatic cancer and at least one case of pancreatic cancer in the family
- been diagnosed with hereditary pancreatitis.
Diana Jupp, CEO of Pancreatic Cancer UK, said: "Pancreatic cancer is a devastating disease and once someone in your family has been affected, it's hard not to become fearful for yourself and others in your life. We are so proud to be supported by NHS England on this project, which will help alleviate anxiety around inherited risk of the disease and identify the people who most need regular monitoring.
"It is now vital that as many people as possible use the Family History Checker, so that everyone who should be referred for regular monitoring is found."
Professor Peter Johnson, NHS National Clinical Director for cancer, said:
"This new Family History Checker is a great tool for families where someone has had pancreatic cancer and will help the NHS to identify and support people at risk from it.
"I know it can be daunting to find out if you are at risk of pancreatic cancer, and some people may feel they'd rather not know, but finding out early means people can get the support they need from the NHS.
"We want as many people as possible to take advantage of this new tool, so they can be provided with further testing, surveillance or treatment as early as possible, if your results show you might need them."
