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Objective 7:

Causes of cancer

To understand the causes of paediatric

cancers and to address prevention

wherever possible.

“Why does my child have cancer?” is a crucial question for parents, which most of the time

receives no answer. Relatively few causative factors have been identified so far for childhood

cancers.

g

To run prospective clinical research to reduce the likelihood of long-term side effects in

patients who have a good prognosis malignancy.

Actions

1. Establish guidelines for follow-up that cover all possible late-occurring side effects of

current treatments;

2. Create and provide a ‘Survivorship Passport’ for each child and adolescent treated for

cancer that will include:

h

History and summary of the patient’s disease as well as treatments received;

h

Relevant follow-up measures, including precautionary measures to improve their

quality of life;

h

A database to store the patient’s clinical data and help monitoring and research;

3. Set up a relevant model of care to allow for a smooth transition to adult medicine (such as

‘long-term follow-up clinics’);

4. Increase research on late-occurring side effects (for example cardiac toxicity, secondary

tumours and infertility) and on quality of survival, including societal and psychological

aspects;

5. Anticipate long-term toxicities of innovative therapies, such as targeted therapies, that will

be introduced in standard treatments;

Two ongoing FP7 European projects, PanCareSurFup and PanCareLIFE, carry out research

on late-occurring side effects [17]. The pilot initiative of the ‘Survivorship Passport’ is being

developed thanks to the support of ENCCA and PanCareSurFup, and the organisation of care

including a virtual late-effects advisory centre, will be also addressed within the ExPO-r-NET

project.

THE SIOPE STRATEGIC PLAN

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Credit Czech Working Group for Paediatric Oncology, Czech Republic

“Survivors of childhood cancer want a normal life.”

(Sabine Karner, PPAC/CCI/PanCare, Austria)