The ECRC represents the common, harmonised voice
for advocacy and lobbying at the European level on the agenda of paediatric and
adolescent cancer clinical and research activities.
The ECRC is an executive body composed by the representatives of the
national paediatric haemato-oncology societies and the European clinical
paediatric haemato-oncology trials, dealing with common issues and addressing
the needs of the paediatric haemato-oncology community at the EU political level.
The PPAC is a deliverable of the ENCCA project and
has been initiated by the International Confederation of Childhood Cancer Parent
The PPAC will represent the all-important patient voice within the ENCCA
network of excellence and will provide support to parent and patient groups
across Europe, as well as link with several work packages to ensure patient
participation is prioritised in ENCCA.
The LTS WG group will set out the long-term
strategy for ENCCA, including priority areas and activities, future goals and
strategies on how to link with related EU projects and initiatives, to ensure
ENCCA is sustainable and can meet its objectives. This is a multidisciplinary
group of key experts both from within paediatric oncology and also adult
Scientific Advisory Board (SAB)
The SAB is a committee composed of internationally recognized specialists
in paediatric and adolescent oncology that can be addressed when needed during
the course of the ENCCA project, in order to receive independent, scientific
advice on the project’s scientific output.
Ethics Advisory Committee
Composed of external experts, the EAC is a non-executive body addressing
ethical issues raised by the ENCCA consortium. The EAC is led by Jean-Claude K.
Dupont (PhD.) on behalf of Prof. François Doz; the Committee engages with
parents, guardians and survivors on ethical issues such as informed consent in
clinical trials. The EAC is responsible for peer-reviewing the deliverables
expected by Work
Package 18 and for providing input and advice to ENCCA partners about
ethical issues encountered during the project.
Rights Working Group (IPR WG)
Most institutions hosting a
biology research programme on paediatric malignancies have their own policy and
staff to protect intellectual property. On the other hand, there is no culture
of intellectual property rights among clinicians and teams running clinical
trials in paediatric oncology. The number of investigator-driven clinical trials
through investigator-initiated studies partly funded by pharmaceutical companies
will increase, as well as translational and biological research within those
phases I, II and III trials.
Therefore, it is crucial to adequately protect knowledge and know-how
that will be generated, and this Working Group has been created with the
objective to increase awareness of researchers and clinicians for a better
monitoring of knowledge protection and exploitation of clinical research and
technologies, and serve as a resource to help partners and European disease
groups to protect their intellectual property
TYA Steering Group WP17
Work Package 17 has established a European Steering
Group, including clinicians from both paediatric and adult oncology who have met
at least annually to progress our work defining the scope and Europe-wide agenda
for TYA service developments, professional education and practice guidance.
Round-table discussions and open invitation meetings have taken place. Currently
we are finalising our service guidance for implementation
Group for Bone Sarcoma
The International Steering Group for Bone Sarcoma was established
on 21 January 2011, encompasses 11 networks
(EURAMOS, EuroBoNeT, EURO-E.W.I.N.G., COSS, EOI, EORTC- STBSG, EuroSarc, ISG,
SFCE/GSF-GETO, SSG) and, since, it holds regular meeting.
Paediatric Oncology and
A platform for communication and
interaction with industry will be created in collaboration with the Biotherapy Development
Association (BDA), to address improvement in paediatric new oncology
ENCCA will propose to BDA to address the topic of paediatric oncology
drug development and together will create a unique platform for interaction,
communication and collaboration between the industry and the paediatric oncology
community, as well as patient/parent organisations, regulators and policymakers.
ENCCA representatives will participate in meetings and workshops focused on
specific oncology themes, to address hurdles and explore potential