The ENCCA Consortium

The ENCCA Consortium consists of 34 partners spanning 11 European countries.
As part of its mission to become a sustainable European Virtual Institute, over the 4 years of the project duration ENCCA will integrate all stakeholders - including parents and patients groups - as well as the clinical trial groups, in order to efficiently structure and enhance collaboration in this field.

The stakeholders of ENCCA include:

  • High-level European groups of clinicians and researchers, representing all paediatric tumours running high-quality and internationally-recognised biological research.
  • Advocacy groups supporting young patients through the physical, social and personal effects of cancer treatment.
    Statisticians specialised in biomedical research.
  • Pharmaceutical companies interested in facilitating young patients’ access to new drugs.
  • Regulatory bodies involved in streamlining drug development efforts in Europe.
  • Broader health policy community.

This large and dynamic network will include 18 work packages (WP) structured around 3 main channels of activities.
You can find more information on the Integrating, Joint Research and Spread of Excellence activities of ENCCA here, and an overview of all Work Packages here.



Project Management Team (PMT)

For information on the ENCCA Project Management Team here.


General Assembly

The General Assembly is the general decision-making body of the project, which involves the Project Management Team and representatives from all 34 ENCCA partners.
The next General Assembly of ENCCA will take place in Vienna on 15 - 17 January 2014: you can find more information here.


Other Committees

European Clinical Research Council for Paediatric and Adolescent Oncology (ECRC)

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.
More information on the ECRC is available here.


Parent and Patients Advocacy Committee (PPAC)

The PPAC is a deliverable of the ENCCA project and has been initiated by the International Confederation of Childhood Cancer Parent Organisations (ICCCPO).
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.
More information on the ENCCA PPAC is available here.


Long Term Sustainability Working Group (LTS WG)

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 oncology/oncopolicy.
More information on this high-level group is available here.


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 (EAC)

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.


Intellectual Property 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 rights.


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 work.


International Steering 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 Industry

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 drug development.

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 solutions.