21 / 49
Strategy
g
To ensure that all centres in Europe that treat children and TYA with cancer meet the
European Standards of Care for Children with Cancer;
g
To develop pathways that, for complex treatments and rare diseases/situations, allow
access to specialised expertise, specialised technologies (i.e. specialised surgery,
radiotherapy techniques, haematopoietic stem cell transplantation) or clinical research
(i.e. early phase trials of new treatments).
Actions
1. Build a European Reference Network (ERN) in paediatric haematology-oncology within the
EU Cross-Border Healthcare Directive (2011/24/EU):
h
Create tumour boards by disease – to be considered at three levels: institutional,
national and European – in order to provide advice on the best appropriate
treatment and care for individual patients;
h
Identify centres that are able to deliver standard care and treatments (specialist
centres) as well as hubs of coordination, which will also deliver complex treatments
and specialised technology;
h
Improve referral to specialist centres and hubs of coordination within EU member
states and across borders;
h
Set up an efficient e-Health and IT platform;
2. Warrant availability of essential medicines for all patients;
3. Specifically address the needs of children and adolescents with extremely rare cancers
(e.g. adult cancers such as thyroid cancer, breast cancer and melanoma – occurring
extremely rarely in the paediatric population – and extremely rare specific paediatric
malignancies such as pleuropulmonary blastoma, etc.);
4. Ensure that paediatric cancer registries cover all European countries, in order to
adequately monitor the effects of the present Strategic Plan, and ensure that each
National Cancer Plan addresses the specific needs of children and adolescents with cancer;
5. Significantly improve access to palliative care for young patients at the end of their lives;
6. Provide high quality training for all health professionals across Europe, and make
paediatric haematology-oncology a recognised sub-specialty.
The ExPO-r-Net project, funded by DG SANTE, is currently piloting the concept of a European
Reference Network (ERN) in paediatric haematology-oncology, which specifically addresses
the topic of extremely rare cancers and long-term follow-up.
21
A EUROPEAN CANCER PLAN FOR CHILDREN AND ADOLESCENTS
“All European children and young people with cancer should have access
to standards of care, expertise and clinical research.” (Participants at the
SIOPE-ENCCA Conference, 18-19 September 2014)