PancreOS – Pancreatic Cancer Overall Survival Registry

The idea

Pancreatic Cancer Europe’s Registries Workstream is working on the development of PancreOs, the Pancreatic Cancer Overall Survival Registry in Europe.

The need for its creation is motivated by multiple factors: today, patients who are lucky enough to be diagnosed can benefit from care, although discrepancies still exist. Yet, there are different types of regional or national EU registries already running, different tumor subtypes, different prevention, diagnostic and therapeutic approaches and an urgent need to identify these data by implementing registries and identifying areas of synergy and improvement.

PancreOs is intended to rely on an agreement on the minimum data collection standards from pancreatic cancer. It will also comprise a permanent and sustainable online standardised exchange of data through the use of common datasets to identify these differences and promote a consensus on improvement strategies.

The event aims to rally pancreatic cancer researchers and MEPs to meet and discuss the current situation and needs for an EU pancreatic cancer registry and the next challenges to address in the concrete implementation of such EU registry.

The event was organised on the occasion of the World Pancreatic Cancer Day 2020.

PCE event was hosted by MEP Joanna Kopcińska (ECR, Poland) and was endorsed by Challenge Cancer EU Parliamentary Intergroup. It has been the first event within the European Parliament specifically focusing on the need for implementing a pancreatic cancer EU registry.

The programme

Introduction by MEP Joanna Kopcińska (ECR, Poland), host of the event

Conference: Implementing pancreatic cancer registries, a necessity for the EU

• Testimony of a patient survivor: what is the importance of establishing cancer registries: Ali Stunt, Founder and Chief Executive of Pancreatic Cancer Action and Chair of the Board of PCE
• Europe’s Beating Cancer Plan: Dr Antoni Montserrat Moliner, Active Senior on Public Health. European Commission
• Monitoring pancreatic cancer burden in the context of the European Cancer Information System: Dr Carmen Martos, European Commission, Joint Research Centre (JRC), Ispra, Italy; ENCR
• Concrete obstacles and plan of action for PancreOS: Pr Alfredo Carrato, Director of Medical Oncology Department, Ramon y Cajal University Hospital, Alcala University, IRYCIS, CIBERONC, Madrid, Spain, Board Member of PCE

The event is supported by

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