PancreOS – Pancreatic cancer overall survival registry in Europe, the initial phase

The idea

In 2015, the Spanish Cooperative Group TTD – Tratamiento de los Tumores Digestivos (Digestive Tract Tumors Treatment) started to execute a pilot registry called PancreOS, aiming at collecting a comprehensive set of prospective data from pancreatic cancer patients at any stage of the disease.

The pilot project led in Spain has been a good example of what can be done at EU level for pancreatic cancer registries.

PCE endorsed the initiative and continues to expand it to more countries all across Europe.

The pilot project in Spain was launched based on several observations and statements:

• Noticeable increase in the incidence and mortality of pancreatic cancer, which is set to be the second cause of mortality by cancer in a few years, but data are mostly missing.
• Need to identify high-risk populations, in particular in order to improve prevention and screening.
• Need to identify the epidemiological, clinical and biological characteristics of the different types of pancreatic cancer (e.g. those who survive 2 months and those who survive 2 years) for a personalised medicine approach).
• A more comprehensive knowledge would also allow having higher surgery rates, and therefore better survival rates among patients. Pancreatic cancer has the lowest survival rate of all cancers, and patients affected lose 98% of their healthy life expectancy at the point of diagnosis.
• Need to help reach an earlier diagnosis: due to severe underdiagnosis, median survival for a person diagnosed with metastatic pancreatic cancer is around 8 months¹.
• A more comprehensive knowledge would also allow having higher surgery rates, and therefore better survival rates among patients: Pancreatic cancer has the lowest survival rate of all cancers, and patients affected lose 98% of their healthy life expectancy at the point of diagnosis².

Aims and objectives of the project

The scope of the PancreOS project has been to enhance cancer data available on pancreatic cancer (PC), providing an opportunity for the exploration of patterns of PC patient management across Europe.

The primary aims have been to improve information and permanent and sustainable online standardised data exchange, so to develop a large EU-based pancreatic cancer registry (CR); to gather information related to all aspects of the management of patients with pancreatic cancer – from initial symptoms, diagnosis and throughout the treatment continuum, and to increase the knowledge in the biology of the different pancreatic cancer tumours to identify high-risk subgroups and to customise treatment.

Activities

• Stakeholder meeting
• Preparation of a data collection protocol
• Work Streams meetings