The 5-year survival for children with cancer increased from 30% in the 1970s to more than 80% at present. There are up to 300,000 childhood cancer survivors in Europe and this number is increasing. Years after treatment, childhood cancer survivors are at high risk for developing health and psychosocial late effects, resulting in excess morbidity and mortality compared the general population. The impact on the quality of life (QoL) of survivors and their families, as well as the societal and economic burdens, are significant. However, these impacts can be reduced by long-term survivorship care to detect treatable disease at an early phase and start timely interventions to preserve health, improve QoL, as well as coordinate specialised care and empower survivors. Implementing follow-up care, especially for young adult and adult survivors of childhood cancer, has proven challenging across Europe. These survivors have left paediatric care and most of them have no opportunity to visit experts in survivorship care. To improve survivorship care for these survivors across Europe, PanCareFollowUp will conduct a prospective cohort study to assess effectiveness, value, cost effectiveness and feasibility of the PanCareFollowUp Care intervention, a person-centred approach to survivor follow-up care based on international clinical guidelines for surveillance of late effects. PanCareFollowUp also includes the development and assessment of a personalised, guideline-based eHealth lifestyle intervention. Ensuring that the PanCareFollowUp interventions are used in the real world is paramount to achieving enduring improvements to survivorship care. Hence, the project includes the development of materials to support sustainable maintenance and replication of the PanCareFollowUp interventions. The PanCare network will become the guardian of the interventions after the project, ensuring that the intervention materials are openly available, sustainably maintained and widely shared.

Almost 500,000 former childhood cancer patients (CCS) are now living in Europe. Compared to the general population, CCS represent a vulnerable population as they are at an increased risk of developing health problems, known as late effects, resulting in excess morbidity and mortality. Many survivors are unaware of their personal risk for specific late effects, which reduces their ability to manage their own follow-up care. Similarly, their treating healthcare professionals (HCPs) lack information about care required for CCS and access to treatment data from their childhood cancer. The Survivorship Passport (SurPass) is an innovative, digital tool, developed in previous EU-funded projects, that can be used to overcome these knowledge gaps to improve people-centred long-term survivorship care. Importantly, end users (CCS, HCPs) are integral to the research, represented by three key stakeholder networks (PanCare, SIOP Europe, CCI Europe). PanCareSurPass will conduct a robust assessment of the implementation of the SurPass by first conducting a pre-implementation study in six countries (Austria, Belgium, Germany, Italy, Lithuania, Spain) representing three infrastructural scenarios in Europe. Ethical, structural, organisational, economical, national, local, privacy issues, health systems, and particular national circumstances will be taken into account throughout. An Implementation Strategy will be developed and the SurPass will be updated and validated before use in an implementation study in the six countries. The study will look at a range of outcomes including CCS activation and empowerment, CCS/HCP satisfaction with the tool, feasibility and health economics. Based on the results of the study, a Prediction Model will be developed to promote and support future implementation of the SurPass across Europe.

The 15-month coordination and support action “4.UNCAN.eu” will generate a strategic agenda to launch UNCAN.eu, a European initiative to UNderstand CANcer proposed by the Mission Board and the European Beating Cancer Plan. This research agenda will be built with the final aim of achieving a new breakthrough in cancer prevention and treatment that will contribute to saving European citizens’ lives and help ensuring an optimal quality of life to disease survivors. To reach a new level of understanding, UNCAN.eu will take advantage of recent advances in research data generation and data sciences. Reliable, high-quality cancer research data generated by experimental model analysis and collected from longitudinal follow-up of cancer patients will be shared and integrated at an unprecedented scale within a Federated Cancer Research data hub, in the context of the General Data Protection Regulation. This information will be used by relevant players in Europe and beyond to address urgent and essential scientific and medical challenges in cancer prevention, early diagnosis, treatment and survivorship, in males and females of various ages. These challenges, identified in close interaction with European patients and citizens, will be tackled through competitive, ambitious and innovative, cross-border and trans-disciplinary research programmes built in a problem-solving manner. The definition of challenges will integrate inequalities in cancer research across regions and member states in order to boost the research potential of less-developed regions in Europe. Players will be committed to open science principles, including FAIR (findable, accessible, interoperable, and reusable) guiding principles for scientific data collection, management and stewardship. The new understanding gained from the collection and analysis of this wealth of data will apply secondarily to other diseases.

Over 200,000 children and adolescents are diagnosed with cancer each year globally, 50,000 in Europe and North America. While there has been improvement in survival since the 1970s, the decrease in mortality has reached a plateau – for children with poor-prognosis cancers resistant or refractory to conventional treatment, the survival is less than 25%. Therefore, there is an urgent need for new medicines to cure aggressive tumors, and to reduce the toxicity and sequelae of the treatments. Developing new drugs for children with cancer is a complicated multi-step process with many involved actors (academic researchers, pharmaceutical industry, patient advocates, regulatory authorities, …). There is a need to improve the efficiency of this process and fulfil the unmet needs of children with cancer. To achieve optimal progress, multi-stakeholder collaboration is mandatory. A lack of knowledge and understanding of regulatory processes is a major roadblock to children and adolescents accessing new and beneficial drugs.The aim of this project is to build an innovative, multi-stakeholder and structured framework with an educational program tailored to the needs of the different actors, that is sustainable in the long-term and takes advantage of the expertise and work already initiated by the ACCELERATE platform. The global objectives of the educational program are:1) To build an educational structure for strategy and regulatory science in pediatric oncology drug development that is sustainable and long-lasting, for future generations of experts to come;2) To foster and disseminate expertise and to overcome stakeholder’s working in silos and strengthen true multi-stakeholder collaboration.The educational program will be based on four pillars: P1: Course on Strategic/Regulatory Science in Paediatric Oncology Drug Development; P2: 360º Multi-stakeholder rotation; P3: ACCELERATE Research Fellowship; and P4: Online Educational Training Program.