Table Of Content. Outputs... 9

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1 Table Of Content European Expert Paediatric Oncology Reference Network for Diagnostics and Treatment... 2 Summary... 3 Coordinator, Leader contact and partners... 5 Klinikum Dortmund ggmbh... 5 Uniwersytet Medyczny w Lublinie... 5 Azienda Ospedaliera di Padova... 5 Lunds universitet... 5 FONDAZIONE IRCCS ISTITUTO NAZIONALE DEI TUMORI... 5 ECRM Foundation... 5 Istituto Giannina Gaslini... 5 SIOP Europe... 5 University of Birmingham... 5 Institut Gustave Roussy... 5 Österreichische-Kinder-Krebs-Hilfe... 5 Charité - Universitätsmedizin Berlin... 5 University College London... 5 Consorzio Interuniversitario CINECA... 5 FUNDACION PARA LA INVESTIGACION DEL HOSPITAL UNIVERSITARIO LA FE DE LA COMUNIDAD VALENCIANA... 5 Christian-Albrecht-Karls-Universität zu Kiel... 5 AIT Austrian Institute of Technology GmbH... 5 Outputs... 9 D01 - Interim, technical progress and financial progress reports D02 - Dissemination Plan for cross-communication, knowledge transfer and activity integration D03 - Multi-stakeholder conference D04 - External evaluation report of project D05 - Report on specific needs of particular paediatric oncology patients D06 - Report on the established roadmap identifying reference ERN centres and tumor boards D07 - Report identifying European tumour boards of ECTGs providing ICT logistics D08 - Identification and certification process for healthcare centers to be recognised within the European Reference Network D09 - Set-up a virtual late-effects advisory centre for specific care needs of childhood cancer survivors D10 - Standard of care guidelines for VRT and very rare STS Page 1/11

2 European Expert Paediatric Oncology Reference Network for Diagnostics and Treatment JA GPSD [705038] 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 PROGRAMME PRIORITY: - CALL: Promote Health (Hp-2013) TOPIC: PROMOTE HEALTH (HP-2013) EC CONTRIBUTION: EUR KEYWORDS: Cancer, Children, Health system, Research, ehealth + telemedecine PORTFOLIO: Cross-border care Page 2/11

3 SUMMARY 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 preexisting 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 Page 3/11

4 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. Page 4/11

5 COORDINATOR, LEADER CONTACT AND PARTNERS COORDINATOR (St. Anna Kinderkrebsforschung e.v.) Zimmermannplatz Vienna Austria Project leader contact Name: Ladenstein Ruth Phone: PARTNERS Klinikum Dortmund ggmbh Street: Beurhausstrasse 40 City: Dortmund Country: Germany Uniwersytet Medyczny w Lublinie Street: Racławickie 1 City: Lublin Country: Poland Azienda Ospedaliera di Padova Street: Via Giustiniani, 3 City: Padova Country: Italy Page 5/11

6 Lunds universitet Street: Paradisgatan 5C City: Lund Country: Sweden FONDAZIONE IRCCS ISTITUTO NAZIONALE DEI TUMORI Street: Via Giacomo Venezian 1 City: Milan Country: Italy ECRM Foundation Street: Academic Offices: Kings Health Partners City: SE1 9RT London Country: United Kingdom Istituto Giannina Gaslini Street: Via G. Gaslini, 5 City: Genova Country: Italy SIOP Europe Street: Avenue Mounier 83 City: 1200 Brussels Country: Belgium University of Birmingham Street: Edgbaston City: B15 2TT Birmingham Country: United Kingdom Page 6/11

7 Institut Gustave Roussy Street: Rue Camille Desmoulins, 39 City: Villejuif Country: France Österreichische-Kinder-Krebs-Hilfe Street: Borschkegasse 1/7 City: 1090 Vienna Country: Austria Charité - Universitätsmedizin Berlin Street: Charitéplatz 1 City: Berlin Country: Germany University College London Street: Gower Street City: WC1E 6BT London Country: United Kingdom Consorzio Interuniversitario CINECA Street: Via Magnanelli 6/3 City: Casalecchio di Reno (BO) Country: Italy FUNDACION PARA LA INVESTIGACION DEL HOSPITAL UNIVERSITARIO LA FE DE LA COMUNIDAD VALENCIANA Street: Av. CAMPANAR, N 21 City: VALENCIA Country: Spain Christian-Albrecht-Karls-Universität zu Kiel Page 7/11

8 Street: Christian-Albrechts-Platz 4 City: Kiel Country: Germany AIT Austrian Institute of Technology GmbH Street: Donau-City-Strasse 1 City: 1010 Vienna Country: Austria Page 8/11

9 OUTPUTS D01 - Interim, technical progress and financial progress reports. D02 - Dissemination Plan for crosscommunication, knowledge transfer and activity integration. D03 - Multi-stakeholder conference. D04 - External evaluation report of project. D05 - Report on specific needs of particular Page 9/11

10 paediatric oncology patients. D06 - Report on the established roadmap identifying reference ERN centres and tumor boards. D07 - Report identifying European tumour boards of ECTGs providing ICT logistics. D08 - Identification and certification process for healthcare centers to be recognised within the European Reference Network. D09 - Set-up a virtual late-effects advisory centre for specific care needs of childhood Page 10/11

11 Powered by TCPDF ( cancer survivors. D10 - Standard of care guidelines for VRT and very rare STS. Page 11/11