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European Expert Paediatric Oncology Reference Network for Diagnostics and Treatment [ExPO-r-NeT] [20131207] - Project
General objectives

This project will build a Paediatric Oncology (PO) European Reference Network (ERN) providing paramount requirements for ‘Cross-border healthcare’ allowing the provision of healthcare to children and young people with cancer in a Member State other than the Member State of affiliation. It will identify target groups with conditions that require a particular concentration of resources or expertise, especially when the expertise with certain cancer conditions is rare and case volume low. EXPO-r-NeT aims to reduce current inequalities in childhood cancer survival and healthcare capabilities in different member states. The main objective is to establish a PO-ERN linking pre-existing reference centres inherent to the Cooperative PO- Clinical Trial Groups which may contribute high-level diagnostic and medical expertise to provide cross-border best care to rare childhood cancer populations.

Strategic relevance and contribution to the public health programme

The strategic relevance of this project will be the generation of information and provision of a framework for the PO-ERN that can truly improve standards of care for children and young people with cancer. In addition this project will incorporate the expertise from right across Europe and collate existing information to help patients get access to the best possible information, treatment and care. The innovative contribution is a clear roadmap to approved expert referral sites and tumour advisory boards for healthcare providers. This project will support eHealth solutions based on interoperability and standardisation: this will help professionals work more efficiently and exchange information and data that are essential for tumour boards providing advice and expertise beyond local institutional borders. This project has been designed to be compatible and supportive to existing actions and EU-funded projects like ENCCA, PanCareSurFup, IntReALL and EPAAC.

Methods and means

The ECTGs will collate evidence on current national provisions and deficits in Healthcare resources for specified tumor types. The ECTGs will produce reports identifying target patient groups legitimate for cross boarder health care needs and identify the reference centres willing to be visible and accessible as a PO ERN referral site.
- We will use validated, quantitative questionnaires for centres from different EU member states to identify the current functioning of their tumor boards.
- We will create the glossary of terminology and definitions needed for the accreditation process, principles of accreditation process and checklist of compliance enabling self-assessment by PO centres.
- We will maximise the target audiences by integration of stakeholders of SIOP Europe and within other EU projects.
- The existing VRT National Groups will form a Scientific Board developing a consensus definition of VRT in collaboration with adult oncologists.
For more details please see ANNEX 1b.

Expected outcomes period

ExPO-R-NeT will describe and identify childhood cancer patients with special needs and problems considered rare due to the very high level of expertise needed throughout the respective diagnostic and therapeutic measures considered necessary. It will identify and promote the establishment of Tumour Boards as hubs of expertise embedded in pre-existing expertise of CTG across Europe thus creating a virtual ExPO-R-NET tumour board platform.
ExPO-R-NeT will improve the quality of care and survival of children with cancer across Europe, ultimately improving childhood cancer survival rates, and will insist on a standardised summary of treatments for every European childhood cancer survivor. ExPO-R-NeT will provide a follow-up plan including appropriate surveillance and interventions.
National groups interested in the VRT will form a European cooperative group being ultimately able to improve VRT care for children and establish common VTR standards.
For more details please see ANNEX 1b.

Start date: 01/03/2014
End date: 01/03/2017
Duration: 36 month(s)
Current status: Finalised
Programme title: Second Programme of Community action in the Field of Health 2008-2013
EC Contribution: € 1 499 343,00
Portfolio: Cross-border care