Major achievements of the european network for cancer research in children and adolescents (ENCCA)

Abstract

Objectives: Building an effective European research arena by facilitating, fostering and coordinating regional, national and joint European pediatric and adolescent oncology programs and actions between European Member States to develop a virtual European Pediatric Oncology (PO) Institute Methods: The European Network for Cancer Research in Children and Adolescents (ENCCA) project was funded by the European Union's FP7 program in 2011. ENCCA is driven by 34 leading organizations in 11 countries (18 structured work package activities) and interacts with the SIOPE community, aiming to resolving fragmentation in translational research and biobanking, enhancing drug development, improving the clinical trial framework and population-based cancer registries and addressing special needs of patient groups with reference to age and given cancer diagnosis, including ethical aspects in clinical research. Results: Having established the European Clinical Research Council as integrated platform for leukemia and tumor group chairs and presidents of national PO groups together with the European Parents& Patients Advisory Committee, ENCCA helped SIOPE to become the unique voice of European stakeholders resulting in a major impact on the new European Clinical Trials Regulation. ENCCA has designed an nullAdvanced Biomedical Collaboration Domain 4 ENCCAnull (ABCD-4-E) which is a cloud-based solution for the nullEuropean Virtual Institutenull, and has created a roadmap towards the federation of pediatric cancer biobanking resources. Eight clinical trials are embedded in ENCCA, in addition to new methodological approaches and innovative trial designs. One of ENCCA's highlights is the development of the survivorship passport prototype for survivors. ENCCA triggered the establishment of new links of the PO community including patients/parents organizations to Industry and European regulators (EMA). Conclusions: Actions undertaken so far are the basis for a sustainable EU Virtual Institute devoted to improve outcome and the quality of treatment of pediatric cancer and the quality of life of survivors.