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Consumers, Health and Food Executive Agency

European Expert Paediatric Oncology Reference Network for Diagnostics and Treatment

Anita Kienesberger, Malmö (Sweden), 9.5.2015

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Consumers, Health and Food Executive Agency

BACKGROUND

EUROPEAN

REFERENCE

NETWORKS

Co-funded via the European Commission Directorate

General for Health and Consumers (DG SANCO),

ExPO-r-Net implements the Directive 2011/24/EU on the application of

patients’ rights in cross-border healthcare.

United in health and research:

ExPO-r-Net and other EU initiatives

ENCCA (www.encca.eu)

PanCareSurFup (www.pancaresurfup.eu)

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Consumers, Health and Food Executive Agency

WHY EXPO-R-NET?

ExPO-r-Net is a 3-year project that will build a European Reference Network (ERN) for Paediatric Oncology.

ExPO-r-NeT aims to reduce the current inequalities in childhood cancer survival and healthcare capabilities in different EU Member States

Link pre-existing centres of excellence in paediatric oncology.

Enable treatment of children and young people with cancer in

a Member State other than the Member State of affiliation.

Improve access to high-quality health care for all young people

and children with cancer.

Reduce inequalities in childhood cancer survival and

healthcare capabilities in different EU Member States .

Empower patients affected by complex or rare disease to

choose and be reimbursed by public and private healthcare

providers across the EU.

ExPO-r-Net Goals

More than 60 Partners

(Health care professionals /

Hospitals/Institutes)

from 17 coutries

18 core partners

> 50 Collaborating

professional partners

Involving parents and patients

8 Work Packages

Stakeholders

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Consumers, Health and Food Executive Agency

WHY IS EXPO-R-NET?

Because paediatric cancer is still a public health challenge

6,000 children and young people die of cancer in Europe each

year. 10% to 20% of them die from curable forms of cancer

where quality care is not easily accessible.

The quality and availability of paediatric cancer care widely

varies across Europe, with survival generally 10 to 20% lower

in Eastern Europe, a disparity that becomes even larger for

cancers with poor outcomes.

ExPO-r-Net Goals

Because access to quality care saves

children‘s lives

Because together, we are stronger!

A Paediatric Oncology European Reference

Network (ERN) can truly improve the current

standards of care and let children and young

people with cancer benefit from high-quality,

accessible and cost-effective healthcare

Consumers, Health and Food Executive Agency

HOW EXPO-R-NET WORKS?

http://www.expornet.eu/

Identify health inequalities between EU Member States.

Support cooperation on cross-border healthcare and mobility

of patients, health- care professionals and information .

Innovate healthcare delivery.

3 Activity Areas

Centre of excellence: providing highly specialized healthcare.

Paediatric oncology reference roadmap: containing approved expert

referral sites & tumour advisory boards.

Identifying the special needs of childhood and young people cancer types

with experts (ECRC).

ICT tools and e-Health: to facilitate movement of information and

knowledge rather than patients, whenever possible, keeping the patient

within the supportive family and language environment.

Survivorship Passport: already envisaged as part of several previous or

ongoing projects, this instrument will be developed further for long-term

follow-up of childhood cancer survivors across Europe.

Integrating very rare tumors and soft tissue sarcomas into an European

reference network.

Key Concepts and Deliverables

ECRC Members: Chairs of European Paediatric Oncology

Research Groups

CWS (Cooperative

Weichteilsarkom Studiengruppeor Cooperative Soft Tissue

Sarcoma Study Group)

EBMT (European Group for bone

marrow and stem cell transplantation - Paediatric Working Party)

EHL (European Hodgkins

Consortium)

EpSSG (European Paediatric Soft

Tissue Sarcoma Study Group)

I-BFM (The International BFM

Study Group)

EURAMOS (osteosarcoma)

EURO-E.W.I.N.G.

EWOG-MDS (myelodysplasia)

Germ Cell Tumours

EICNHL (European Inter-group

cooperation on childhood and adolescent Non Hodgkin Lymphoma)

ITCC (Innovative Therapies for

Children with Cancer)

Histiocyte SocietySIOP Brain tumour group

SIOPEL (SIOPE-Epithelial Liver

Tumour Study Group)

SIOPEN (SIOP Europe

Neuroblastoma Group)

SIOP-RTSG (SIOP Wilms Tumour)

UK Novel Agents Subgroup

ECRC members: Chairs of the National Societiesof Paediatric Haemato-Oncology in Europe

• Blue or pink: European countries with NaPHOS(blue: in EU / pink: non-EU)

• Dashed countries: European countries without a NaPHOS

ECRC Steering Committeeto guide, to discuss, to act ….on behalf of ECRC members

Since January 2013:

•Prof. Ruth Ladenstein, Chair

•Prof. Pamela Kearns, Vice-Chair

•Prof. Stefan Bielack, member of the ECRC Steering Committee

•Prof. Gianni Bisogno, member of the ECRC Steering Committee

•Prof. Martin Schrappe, member of the ECRC Steering Committee

•Prof. Gilles Vassal, member of the ECRC Steering Committee

•Prof. Michel Zwaan, member of the ECRC Steering Committee

Parent Patient Advocacy Committee (PPAC)Created at the 3rd European Member Meeting of ICCCPO in April

2012 in Schengen.

Who Parent organisation/Survivor representative Country

ARNOLD Frederic UNAPECLE France

BASSET Luisa FEPNC - Federacion Española de padres de Niños con Cáncer Spain

KAMERIĆ Lejla The heart for the kids with cancer in FBiHBosnia and Hercegovina

KAMERIĆ Neira The heart for the kids with cancer in FBiH/Cancer Survivor NetworkBosnia and Hercegovina

KIENESBERGER Anita Österreichische Kinder-Krebs-Hilfe Austria

LACK Peter Kinderkrebshilfe Schweiz Switzerland

TSIROU Aimilia Kyttaro/Greek Survivors Association Greece

Advisors:

BODE Gerlind Förderkreis für krebskranke Kinder und Jugendliche Bonn e.V. Germany

NAAFS-WILSTRA Marianne VOKK Netherlands

Project worker:

KARNER Sabine Österreichische Kinder-Krebs-Hilfe Austria

European Reference

Network

Local Healthcare

Provider

Memeber

Member

Local Healthcare

Provider

Member Remote monitoring and

follow-up

Virtual clinical/tumour boards

Remote guidance and

Diagnosis

Secure exchange of Patient

information, databases/registries

Tele-radiology

Tele-surgery

Tele-imaging

Tele-dermatology

Tele-consultation

….

Remote

training

Telemedicine and other IT solutions and tools are the basis for this project

Member

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Kick- Off, Luxemburg March 21st, 2014

18 associated partners

2013 12 07 ExPO-r-Net

Health andConsumers

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