Pancreatic cancer is the only cancer with a mortality on the rise in both sexes1. The late diagnosis of pancreatic cancer is notably due to the lack of identified biomarkers, genes or imaging modalities. Improved survival rates depend on an 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 main objective of the Registries work stream is to fill the gap of the lack of organized data collection in pancreatic cancer, which would lead to a better understanding of the disease and development of more efficacious diagnosis strategies and personalised treatments.
This focus of the platform is based on the observation that over the last number of years there has been very limited research into pancreatic cancer that has yielded substantial results. The vital component of oncological research is, and always has been, the availability of data for researchers.
The Spanish Cooperative Group on Digestive Tract Tumors (TTD – Tratamiento de los Tumores Digestivos) has started to execute a pilot registry called PancreOS. This project aims at collecting a comprehensive set of prospective data from pancreatic cancer patients at any stage of the disease.
The pilot project led in Spain can be a good example of what can be done at EU level for pancreatic cancer registries. The European Multi-Stakeholder Platform will help endorsing and expanding the registry 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 this who survive 2 years) for a personalized 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 earlier diagnosis
- Due to severe underdiagnosis, median survival for a person diagnosed with metastatic pancreatic cancer is around 8 months2.
- 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.
The main goal is to improve knowledge of pancreatic cancer in all its aspects to reach better health outcomes for patients.
Minutes (PDF – 1.1 MB)
Data collection protocol (PDF – 557 KB)
Alfredo Carrato
Professor of Medical Oncology at Alcala University and Director of the Medical Oncology Department at Ramon y Cajal University Hospital in Madrid, Spain. He is presently serving as Director of the Ramon y Cajal Institute for Health Research IRYCIS.
- Health Consumer Powerhouse, Euro Pancreatic Cancer Index, 2014, ISBN 978-91-980687-3-3
- Carrato A, Falcone A, Ducreux, M, Valle, J, Parnaby A, Djazouli K, Alnwick-Allu K, Hutchings A, Palaska C, Parthenaki I. A systematic review of the burden of pancreatic cancer in Europe: Real-world impact on survival, quality-of-life, and costs. J Gastrointest Cancer 2015 Sep;46(3):201-11
Related Projects and Activities
PancreOS – Pancreatic cancer overall survival registry in Europe, 2015
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.
PancreOS – Pancreatic cancer overall survival registry in Europe, 2021
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.