TABLE III.
The 10 Goals and Output of the European Network for Cancer Research in Children and Adolescents (ENCCA)
| Goal | Output | |
|---|---|---|
| 1 | Create a sustainable “European Virtual Institute” for clinical and translational research in childhood and adolescent cancers | Run the global European strategic plan |
| Facilitation of the implementation of investigator-driven clinical trials | ||
| Rapid translation of new knowledge into patient care | ||
| 2 | Define the European Strategy to increase both cure and quality of cure at the Horizon 2020 | The seven medical and scientific objectives and road-map till 2020 |
| The means and needs to run this strategic plan | ||
| 3 | Integrate all relevant stakeholders and enhance collaboration | Ways to commit all stakeholders (clinicians, health professionals, biologists, researchers, imaging developers, epidemiologists, statisticians, drug developers, IT partners, parents and patients, industry, ethical and regulatory authorities) |
| 4 | Reduce knowledge fragmentation and improve communication | Strengthened integration of leukaemia and tumour groups |
| Increased critical mass of expertise and capacity to speed up clinical research integrated into care | ||
| 5 | Improve therapeutic strategies by enabling better access to innovative therapies, knowledge sharing and innovative technology, | A biology-based therapeutic strategy for each paediatric malignancy |
| Shared and mutualised clinico-biological databases | ||
| Prioritisation of new drug development within the European Paediatric Medicine Regulation | ||
| 6 | Improve the quality of life of children and adolescents with cancer with particular emphasis on long term treatments side effects | A “Survivorship passport” available for each patient cured of a paediatric malignancy |
| Facilitation of adequate risk-based advice, follow-up and care | ||
| 7 | Improve access to care and research for teenagers and young adults (TYA) | Sharing practice and promoting service development, interdisciplinary support and specific guidance for care of TYA |
| Strengthened collaboration with adult oncology | ||
| Creation of European TYA Steering groups with all stakeholders and leading health professionals | ||
| 8 | Promote Innovative methodologies and designs for clinical trials | Further address the rarity of patients and conditions to speed up the evaluation of new drugs and new biomarker-driven therapeutic strategies |
| 9 | Organize a comprehensive education and training programme | For health professionals (clinicians, nurses and all professionals in multidisciplinary teams), to facilitate the implementation of standards of care across Europe as well as clinical research |
| For parents and patients, to increase their awareness on clinical research | ||
| 10 | Propose common ethical definitions and adequate monitoring of ethical issues | Identified, documented and classified ethical issues encountered in paediatric oncology research |
| Guidelines |