PancreOS: using data to advance pancreatic cancer care and management in Europe

Challenge

The global incidence of pancreatic cancer has more than doubled in recent decades; pancreatic cancer is now ranking as the sixth leading cause of cancer-related mortality, accounting for nearly 5% of all cancer-related deaths worldwide.¹² It is the fourth leading cause of cancer deaths in Europe and the only cancer with rising mortality in both females and males.³

This trend is linked to late diagnoses, which result from the cancer’s aggressive nature, vague symptoms and limited early detection methods.^{1 3} Improving survival rates depends on gaining a better understanding of the disease and earlier diagnosis, tasks for which pancreatic cancer registries are essential.³

Related to that, making access to new treatment options more universal would improve long-term outcomes for people with pancreatic cancer. This process is also underpinned by registry data – gathering more real-world survival data to better understand the cancer’s burden across Europe can enable more accurate cost analysis, identification of unmet needs and inform planning of care at national and regional levels.

Solution

Pancreatic Cancer Europe launched the PancreOS project in 2021 to build a European network of pancreatic cancer registries.⁴ Cancer registries provide insights for stakeholders in cancer care and, when updated with staging information, enable monitoring of access, care quality and outcomes.⁵

By linking existing databases, PancreOS aims to deliver valuable insights to people living with pancreatic cancer, researchers, healthcare providers and policymakers, ultimately advancing their understanding of pancreatic cancer in Europe.³ It is hoped that over the initial five years of running, PancreOS will improve comprehensive data collection for people at all stages of the disease, address current knowledge gaps through access to comprehensive data, and advance understanding, diagnostic strategies and personalised treatments for pancreatic cancer.⁴

Between 2022 and 2024, the PancreOS project achieved significant milestones in improving the understanding and management of pancreatic cancer.³ Some of these achievements include mapping existing pancreatic cancer registries across Europe and establishing connections among population- and hospital-based registries.³ An online data collection system (REDCap) has been implemented, with 22 registries expressing interest in joining and 9 already actively entering data.³ Data collection is underway from the initial participant registries, with preparations for the PancreOS data analysis also in progress.³

Through analysing diagnostic procedures, tumour characteristics, treatments and survival data, PancreOS identified key unmet needs which, if addressed, would deliver more reliable diagnosis and better outcomes.³

PancreOS has identified the need to collect more standardised data, develop uniform protocols for tumour characteristics, and improve understanding of treatment differences across Europe. Successfully addressing those gaps would allow stakeholders to develop new treatment protocols and improve patient care, as well as improving consistency in survival data reporting.³