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ENCCA, a project aiming to improve the quality of life of children, teenagers and young adults with cancer by efficiently structuring collaboration within the paediatric oncology community in Europe.
The ENCCA project funded by the European Union (under grant agreement no HEALTH-F2-2011-261474) over the last 5 years efficiently structured and enhanced collaboration within paediatric oncology in Europe. Actions were driven by 34 partners of 27 paediatric oncology institutions in 11 European countries led by St. Anna Kinderkrebsforschung in Vienna and by the Europe International Paediatric Oncology Organisation (SIOPE) located in Brussels.
ENCCA achieved its mission in many ways:
ENCCA and SIOPE integrated all relevant stakeholders, their expertise and viewpoints and changed the landscape of paediatric haemato-oncology by bringing together European clinical trial groups and National Paediatric Haemato-Oncology Groups, resulting in a fast-growing identified membership community. The official inauguration of the new steering structure, the SIOPE Clinical Research Council, took place during the 5th and final Annual General Assembly in December 2015, in Brussels, which will better convey the strong voice of this community in the future.
To ensure long-term sustainability, ENCCA partners and SIOPE have defined the strategic European Cancer Plan for Children and Adolescents - strongly supported by parents, patients and survivors. It was first presented during the European Cancer Congress (25-29 September 2015, Vienna, Austria) and was further discussed at the EU-policy level during a dedicated event on November 18th, 2015 at the European Parliament in Brussels, Belgium. This Plan will give directions to the community in the years to come to increase cure rates, improve quality of survivorship, and foster the multi-stakeholder dialogue and cooperation to achieve best results.
The seven objectives of the Strategic Plan:
- Introduce safe and effective innovative therapies into standard care;
- Install precision cancer medicine to help guide therapeutic decisions;
- Increase knowledge of tumour biology and speed up translation;
- about equal access across Europe to standard care, expertise and clinical research;
- Address the specific needs of teenagers and young adults in cooperation with adult oncology;
- Improve the quality of survivorship;
- Understand the causes of paediatric cancers.
ENCCA helped to build very strong relationships to European Patient and Parent Groups fostered by discussions on ethics in clinical research and gave them a strong European voice.
ENCCA contributed to the European Clinical Trial Regulation as well as to the forthcoming new European Data Protection Regulation.
ENCCA supported the development of the Survivorship Passport, a tool to ensure high-quality long-term follow-up for adult survivors of paediatric cancer. The latter became integral part of the Austrian Cancer Plan, as announced by the Austrian Ministry of Health in 2014.
Project coordinator: Prof. Dr. Ruth Ladenstein, MBA, cPM
Professor of Paediatrics, Senior Consultant in Pediatric Oncology, Head of the Clinical Trials, Unit S2IRP (Studies & Statistics for Integrated Research and Projects)
Children´s Cancer Research Institute, St. Anna Kinderkrebsforschung
Project manager: Zoltán Dobai