The project
Pancreatic cancer accounts for only 3% of cancers but is the fifth leading cause of cancer death. Patients are usually diagnosed at a late stage with spread to other areas of the body, often presenting with vague symptoms. The only ‘red flag’ symptom, for which urgent referral is recommended, is yellowing of the skin and eyes. Once yellowing is visible, the cancer is generally advanced and there’s typically little opportunity for life-prolonging treatments. Outcomes are therefore poor. Australia have better survival rates which may relate to higher proportions of patients being diagnosed at an earlier stage and greater access to CT scanning.
What are you going to do?
Dr Julie Simpson and her team are going to review the information already available about pancreatic cancer stage at diagnosis and its relationship with survival outcomes, for the UK, Australia and other countries. They are going to create a large database including information from UK GP surgeries, a dataset regarding registered cancers and a dataset regarding scanning done in the country.
They aim to find out how often patients who meet the nationally recommended criteria to consider an urgent CT scan are presenting with these symptoms, and how often they are getting this test, in UK general practice. They plan to compare this to a similar database from Australia.
Why is this research important?
Validating the link between earlier stage at diagnosis, and subsequent survival outcomes, underpins the drive to try to catch these cancers sooner and diagnose them before they grow close to important blood vessels and bile duct pipes, and before they spread to distant areas of the body.
Establishing the frequency of patients presenting to GP practices in the UK with the symptoms included in the national guidelines, as well as the proportion of this group having a CT scan requested, will provide valuable information to then investigate if outcomes could potentially be improved by increasing the amount of scanning done for certain patients.
How do I get involved?
This opportunity is open to everyone affected by pancreatic cancer. It is aimed at people living with pancreatic cancer, survivors, carers, family members, and loved ones.
This project requires 3 or 4 meetings per year for 2 hours each, to gain feedback, input and guidance on the thoughts and perspectives about the research topic and ideas. It will be very flexible. Likely virtual meetings but could also do face-to-face if the members were happy to do this. If in-person, then they’d be located centrally in the country – most likely at the University of Sheffield or somewhere in the midlands. Looking for 5-10 members.
No scientific background or prior experience is needed to take part in this opportunity.
Next steps
If you are interested in joining the focus groups or would like more information, please email Julie (j.p.simpson@sheffield.ac.uk) quoting the involvement reference ‘RIN Participation’.

