The ENCCA project (‘European network for cancer research in children and adolescents’) successfully ended on 31st
December 2015. This 5-years’ project achieved its mission by
efficiently structuring collaboration within the paediatric oncology
community in Europe. Funded by the European Union 7th
Framework Programme for Research, ENCCA was driven by 34 partners of 27
paediatric oncology institutions in 11 European countries led by SIOPE
and by CCRI – St. Anna Kinderkrebsforschung (Austria).
Last 17‐18 December 2015, the 5th and ﬁnal ENCCA General Assembly
took place in Brussels, giving an opportunity to summarise the ﬁnal
results of the intensive project activities, to highlight partners’
successes and to learn from each other’s eﬀorts in the ﬁeld of
paediatric haematology-oncology research.
Over the past years, SIOPE and ENCCA changed the landscape of paediatric haematology-oncology research in many ways. The SIOPE Clinical Research Council (SIOPE
CRC, formerly known as ECRC) is an important step forward in the ENCCA
objective to establish a European ‘Virtual Institute of Paediatric
Oncology’. The second day of the General Assembly was marked by the
official inauguration of the revised SIOPE CRC, a key decision-making
body aiming to convey the strong voice of all European Clinical Trial
Groups and National Societies of Paediatric Oncology at the European
overall objective of ENCCA was to efficiently structure childhood
cancer research in Europe. Project partners successfully investigated
several aspects related to paediatric cancers from every angle, from
developing models for bio-banking and genomic analysis to guide
innovative targeted therapy development to new methodologies for
adaptive clinical trial designs for rare diseases, from specific
clinical studies on bone sarcoma, leukaemia and very rare tumours to
risk adaptation of therapeutic strategies in malignant solid tumours,
from clinical epidemiology to handling the delicate transition from
paediatric to adult oncology.
In particular, ENCCA supported the development of the ‘Survivorship Passport’,
a tool to ensure high-quality long-term follow-up for adult survivors
of paediatric cancer. This important initiative, developed by SIOPE
partners, addresses the current lack of information on many survivors’
medical history – particularly critical as children become adults or as
they move to another country – by providing relevant information on
their medical history, and raising awareness of the potential risks or
late effects stemming from the disease and treatment (more information
on the Survivorship Passport here). This innovative tool is starting to be integrated in National Cancer Plans, as it has been the case of Austria in 2014.
bringing together and integrating the relevant expertise and viewpoints
of all relevant stakeholders, the all-encompassing activities within
the project resulted in a fast-growing community.
ENCCA helped to build very strong relationships with European parent and parent advocates,
which resulted in a Memorandum of Understanding between SIOPE and the
Europe regional committee of Childhood Cancer International (CCI), the
successor of the ENCCA Parent and Patient Advocacy Committee (PPAC).
The project also promoted effective partnerships with industry
via the CDDF-SIOPE-ENCCA-ITCC Multi-stakeholder “Paediatric Oncology
Platform”. Representatives from regulatory bodies, academia, the
pharmaceutical industry, parents and policymakers cooperate on a
permanent basis within the 4 working groups of this Platform, and work
on concrete proposals to improve new oncology drug development for
children and adolescents.
the course of the past years, SIOPE and ENCCA made several efforts to
integrate and showcase ENCCA in all its initiatives at the European
level. The project had a strong impact on European Policies:
to name just a few, the ENCCA Project Coordinator, Activity
Coordinators and other partners contributed to the effective revision of
the European Clinical Trial Regulation, they are now expressing their
views on the Paediatric Medicines Regulation (see article in this
newsletter) as well as to the forthcoming new European Data Protection
Regulation, and were represented as speakers at major EU policy events.
ENCCA’s visibility and success enabled the launch of ExPO-r-Net,
a project focusing on the access to quality cross-border healthcare and
expert advice to all paediatric patients in Europe. By building a
European Reference Network for Paediatric Oncology, this ‘European
Expert Paediatric Oncology Reference Network for Diagnostics and
Treatment’ addresses the existing difference in healthcare capabilities
and in children’s survival across Europe (www.ExPOrNet.eu).
Over the last 5 years ENCCA experts and partners successfully deﬁned the very much needed SIOPE Strategic Plan ‘A European Cancer Plan for Children and Adolescents’,
which will ensure long-term sustainability of ENCCA achievements. This
reference document will give directions to the community in the years to
come to increase cure rates, improve quality of survivorship, and
foster multi-stakeholder dialogue and cooperation to achieve the best