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It is estimated that 4-8% of paediatric cancers occur within a known genetic predisposition

and more than 100 genetic syndromes with a risk of cancer in childhood are known. The

proportion may increase as more and more rare cancer gene mutations are discovered

through ongoing analyses in areas such as genomics. Some studies already suggest that

up to one in four children and adolescents with a history of cancer may have a genetic

predisposition condition [18]. The identification of the genetic basis of rare inherited cancers

in children has revealed key pathways that are shared with sporadic tumours, even in adults.

Sequencing of the whole genome will generate new information that can be used to improve

care and to identify new genetic hallmarks of cancer, which can be turned into targets for

new therapies.



To increase research focused on predisposition to childhood cancer and on the oncogenic

drivers that increase the risk of childhood cancer by:


Using whole genome sequencing to further uncover genetic predisposition to

paediatric cancers;


Carefully addressing the pragmatic and ethical issues of genetic testing and

counselling, anticipating that DNA testing is becoming widely available;


Addressing questions on the environmental causes of paediatric cancer through

scientifically-led and evidence-based studies.


1. Create a European consortium on genetic predisposition to childhood cancers in order to

coordinate research and guide implementation of new knowledge in the clinical setting;

2. Provide guidelines and train health professionals on how to identify patients with a

possible genetic predisposition, and how to inform parents;

3. Improve access to paediatric oncogeneticists and genetic testing in Europe;

4. Develop new strategies for prevention and monitoring, including through early diagnosis

and screening;

5. Run high-resolution studies through the SIOPE clinical epidemiology platform (defined

later in this document), to determine the role of external risk factors.



“Childhood cancer survivors in Europe should have access

to adequate follow-up.” (PanCare partners: Sabine Karner,

Austria; Lars Hjorth, Sweden; Riccardo Haupt, Italy)