Vassal, G; Schrappe, M; Pritchard-Jones, K; Arnold, F; Basset, L; Biondi, A; Bode, G; ... Ladenstein, R; + view all Vassal, G; Schrappe, M; Pritchard-Jones, K; Arnold, F; Basset, L; Biondi, A; Bode, G; Eggert, A; Hjorth, L; Kamerić, L; Kamerić, N; Karner, S; Kearns, P; Kienesberger, A; Kowalczyk, J; Lack, P; Perilongo, G; Sullivan, R; Tsirou, A; Essiaf, S; Ladenstein, R; - view fewer (2016) The SIOPE strategic plan: A European cancer plan for children and adolescents. Journal of Cancer Policy , 8 pp. 17-32. 10.1016/j.jcpo.2016.03.007.

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Abstract

Each year, more than 6000 young people in Europe die of cancer. There are more than 300,000 European childhood cancer survivors (in 2020, they will be nearly half a million): two-thirds of them have some late side effects of treatment, that are severe and impact on the daily life of half of those affected. Within the European Network for Cancer research in Children and Adolescents (ENCCA), SIOPE and the European paediatric haematology-oncology community have established a long-term sustainable Strategic Plan to increase the cure rate and the quality of survivorship for children and young people with cancer over the next ten years. The ultimate goal is to increase the disease- and late-effect- free survival after 10 years from the diagnosis, and beyond. Seven medical and scientific objectives have been set up to achieve these goals: 1. Innovative treatments: to introduce safe and effective innovative treatments (i.e. new drugs, new technologies) into standard care; 2. Precision cancer medicine: to use improved risk classification as well as biological characteristics of both the tumour and patient (such as molecular and immunological factors) to help guide decisions on which therapies to use; 3. Tumour biology: to increase knowledge of tumour biology and speed up translation from basic research to clinical care to benefit patients; 4. Equal access: to bring about equal access across Europe to standard care (in both diagnosis and treatment), expertise and clinical research; 5. TYA: to address the specific needs of teenagers and young adults (TYA), in cooperation with adult oncology; 6. Quality of survivorship: to address the consequences of cancer treatment such as long-term side effects, to better understand the genetic background/risk of an individual, and to improve quality of life of childhood cancer survivors; 7. Causes of cancer: to understand the causes of paediatric cancers and to address prevention wherever possible. SIOPE will steer and coordinate the effective implementation of this Strategic Plan, together with the European Clinical Trial Groups (ECTGs) and the National Paediatric Haematology Oncology Societies (NAPHOS), in close cooperation with the parents, patients, and survivors’ advocates from the European Regional Committee of Childhood Cancer International (CCI). Cross-tumour platforms and projects will facilitate this implementation: a Clinical Trial Facilitating (CTF) platform to ease setting up of clinical trials within the new EU Clinical Trial Regulation, the PICORET (Population Improvement in Childhood cancer Outcomes through Research, Evaluation and Training) outcome research project to evaluate and monitor progress in childhood cancer survival and therapy effectiveness, the QUARTET (Quality and Excellence in Radiotherapy and Imaging for Children and Adolescents with Cancer across Europe in Clinical Trials) project for quality assurance in radiation therapy, ACCELERATE, the CDDF-SIOPE-ITCC multi-stakeholder platform to improve oncology drug development for children and adolescents, and the ‘Ethics and Social Science and Humanities’ project to address the ethical aspects related to paediatric cancer. An efficient IT infrastructure to support e-Health and research will be developed, and a European Reference Network for paediatric patients with cancer will be created to facilitate cross-border healthcare and access to expertise. The ‘Oncopolicy’ programme will ensure that the needs of young people are well taken into account into all EU policy initiatives in the field of health and research. Finally, the ‘Education and Training’ programme will ensure an adequate training to paediatric oncology health professionals. Partnerships will be strengthened with patients, parents and survivors’ advocates, adult oncologists as well as paediatric oncologists from other continents. ‘Intelligent and transparent’ public-private partnerships, recognizing the specificities of paediatric haematology-oncology, will be established with industry. The Strategic Plan’s projects and structures will be funded through European and national grants, as well as by charities and industry. In conclusion, as a result of several initiatives to involve all stakeholders and ensure that all their points of view would be taken into account in the document, this long-term sustainable Strategic Plan has achieved a broad consensus, and will serve as the 'European Cancer Plan for Children and Adolescents'.

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