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All this is expected to generate sustained

community dialogue, concerted evidence

generation as well as transverse capacity-

building on non-technical domains, first of all

on ethical issues.

The SIOPE portal

The portal set-up within the ENCCA project

will be transferred to SIOPE after the end

of the ENCCA project (December 2015).

This online ‘one-stop-shop’ portal will support

communication and interaction between

everyone involved in implementing the

strategic research agenda. It will serve as a

resource for documentation and as a platform

for information exchange.

Each patient will have a unique ID (EUPID) so

that their data can be anonymised and shared

between different databases. A pilot project

for an integrated IT structure that will allow

information to be linked between sources

(such as registries, clinical trial databases,

hospital electronic health records) and users

(such as researchers and analysts) is being

developed by the IT providers of ENCCA.

Within ENCCA, a consultation IT platform has

been developed for patients with haepato-

blastoma (a very rare disease) by SIOPEL

along with CINECA. This platform (including

pathology slides and images) facilitates access

to expert advice for diagnosis and treatment,

including indications of liver transplant. This

IT tool is further developed within the ExPO-r-

Net project for retinoblastoma and extremely

rare paediatric tumours, and will eventually be

adaptedforotherdiseaseswithinthePaediatric

Oncology Europe Reference Network.

In addition, an IT platform for virtual tumour

boards will be developed.

Based on these experiences and following

thosepilotprojects,SIOPEandECTGswilldefine

how to structure the best IT environment that

will allow the implementation of the Strategic

Plan.

Network of biobanks

Samples frompatients and tumours, which are

labelled with additional clinical information,

are vital for the success of the SIOPE Strategic

Plan. The aim of SIOPE is therefore to support

a network of biobanks that can share data

electronically, in keeping with EU data

protection laws. The difficulty of the task is

not underestimated.

A vital step in the development of such a

network within SIOPE is the introduction

of a unique patient identifier (the above

mentioned EUPID) for every paediatric cancer

patient treated in Europe, as well as the

development of standardised patient consent

forms. These must be in line with national

data protection laws in European countries,

and allow for new developments in molecular

analysis of tumour samples (particularly next-

generation sequencing), as well as the wishes

of patients and parents and other ethical

considerations.

In addition to this, ENCCA guidelines are

currently being finalised on the standards for

tumour and other patient samples (e.g. blood

and plasma) as well as related materials like

DNA and RNA, and on the process of access

and use.

THE SIOPE STRATEGIC PLAN

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