ENCCA: Changing the Landscape of Paediatric Haemato-Oncology Research

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).ENCCA 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 level (see article in this newsletter). ENCCAThe 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. ENCCA3By 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. ENCCA4In 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 results (see article in this newsletter). More information: