The project
Many people are found to have pre-cancerous cysts in their pancreas. Doctors currently struggle to tell which cysts are harmless and which will turn into cancer. This uncertainty leads to many patients undergoing major, high-risk surgery (called a Whipple procedure) when it wasn’t needed. This surgery carries serious risks and can cause lifelong complications. Dr Frederik Lassen is studying archived tissue samples from patients in Sweden to look for specific chemical patterns on DNA, called methylation markers, that reliably identify which cysts are dangerous. No new patients are recruited; they use only tissue already stored in a hospital biobank.
What are they going to do?
The team would like to speak with you informally over Zoom or Google Meets for around 20 minutes. They want to understand your experience of living with pancreatic cysts or recovering from pancreatic surgery, and what matters most to you as a patient. Your perspective will help them ensure their research is relevant to patients and that they communicate our findings in a way that is meaningful and accessible.
Why is this research important?
Pancreatic cancer has one of the worst survival rates of any cancer, partly because it is so hard to catch early. Many patients with pre-cancerous cysts undergo major surgery unnecessarily. Roughly 60 to 70% of Whipple procedures are later found to have been avoidable, and this surgery carries a mortality risk of 3 to 5% and causes serious complications in up to half of patients. A reliable test that tells doctors which cysts truly need surgery could spare thousands of patients from unnecessary operations, reduce lifelong complications, and ultimately save lives. Their findings will form the scientific foundation for a future minimally invasive.
How to get involved
This opportunity is open to people who have direct experience of pancreatic cyst surveillance or who have undergone surgery to remove all or part of the pancreas, including the Whipple procedure or partial pancreatectomy.
No scientific background or prior experience is needed to take part in this opportunity.
Next steps
If you would like to join the focus group, please contact Dr Frederik Lassen (advocacy@omos.bio) quoting the involvement reference ‘OSMOS RIN involvement’.
