PancreOS – Pancreatic cancer overall survival registry in Europe, 2021

The idea

Pancreatic cancer is the only cancer with mortality on the rise in both sexes. The late diagnosis of pancreatic cancer is notably due to the lack of identified biomarkers, genes or imaging modalities. Improved survival rates depend on improved knowledge of the disease, increasing the ability to diagnose it earlier. If advances in pancreatic cancer research are to be made and the commitments of Member States to effective cancer control fulfilled, then registries on pancreatic cancer are a prerequisite.

The PancreOS is a long-term project, started after the first pilot action on registry implemented in 2015 by the Spanish Cooperative Group on Digestive Tract Tumours (TTD – Tratamiento de los Tumores Digestivos), that has been a good example of what can be done at EU level for pancreatic cancer registries.

Aims and objectives of the project

The overall aim is to create a European network of pancreatic cancer registries to improve the collection of a comprehensive set of prospective data from pancreatic cancer patients at any stage of the disease, so to fill the gap of the lack of organised data collection in pancreatic cancer and to promote a better understanding of the disease and the development of more efficacious diagnosis strategies and personalised treatments.

Among the specific objectives:

• To implement a European network of pancreatic cancer registries to provide a comprehensive view of pancreatic cancer patient management in Europe.
• To identify and present the inequalities in reporting pancreatic cancer data.
• To promote a better understanding of the disease and the development of more effective diagnosis strategies and personalized treatments.

Activities

• Mapping and characterization of the existing registries and biobanks on pancreatic cancer in Europe, through the collection of summarized data
• Networking among the existing registries and biobanks on pancreatic cancer in Europe
• Data collection and management, through a specific platform able to collect summarized data from all participating registers
• Periodic meetings among the participating registries