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Here below, some ENCCA key opinion leaders comment the progresses made by the project so far and the vision for the future of paediatric oncology.

​Ruth Ladenstein - Introduction to ENCCA

ENCCA Coordinator, Assoc. Prof. Ruth Ladenstein, provides an insight into the project and its many ambitious aims and structure.


​Gilles Vassal – Long-term vision of ENCCA

ENCCA Activity Coordinator and President of SIOPE, Prof. Gilles Vassal, provides an insight into the ENCCA Long-term Sustainability Group, a group of experts from several fields involved both in ENCCA and other European science policy initiatives and collaborations.This group aims to provide a vision for the future of paediatric oncology in Europe and by the end of the ENCCA project will create a strategy on how to sustainably maintain and accelerate the ENCCA activities.


​Angelika Eggert – Innovation in biology

Prof. Angelika Eggert discusses the progress made in the ENCCA Work Package she leads, Biology to guide innovative targeted therapy development. Working with other top experts in the biology field, this work package has made excellent progress in a short time in their efforts to integrate and harmonise existing biological datasets into experimental data and develop new analytical tools.


​Angelika Eggert – Sustaining ENCCA advances in biology

Leading paediatric oncologist Prof. Angelika Eggert, from the Essen University Hospital in Germany, emphasises the need for more long-term sustainable actions in order to provide true results that can help young cancer patients.


Ian Lewis – European network for teenagers and young adults - Part 1

Work Package Leader Prof. Ian Lewis from Leeds details the progress and success being made in improving services and awareness for teenagers and young adults with cancer in Europe. The objective of this important work is to create a European network for teenagers and young adults with cancer (ENTYAC) which aims to enhance the efforts made by different groups and experts across Europe, promoting awareness of their specific needs and ensuring timely diagnosis, amongst several other activities.


​Ian Lewis – European network for teenagers and young adults - Part 2

For the first time, through the ENCCA platform, professionals, parent and patient groups and survivor groups focused on the teenage and young adult cancer group are working together, a huge undertaking with a short timeline and tight budget. Prof. Ian Lewis discusses why such excellent work should continue, as there is so much more to be done.


​Piotr Czauderna - Very rare cancers

Leader of Work Package 12, Prof. Piotr Czauderna, discusses the exciting developments taking place within ENCCA to advance clinical research on the rarer paediatric cancers. While all childhood cancers are considered rare, some cancers are particularly rare such as hepatoblastoma. Huge progress has been made in bringing together data on this disease area, under the ENCCA umbrella, which were recently published.


​​Ruth Ladenstein and Pam Kearns on ECRC

ENCCA ​​​​Coordinator Assoc. Prof. ​​Ruth Ladenstein and Prof. Pam Kearns discuss the European Clinical Research Council for paediatric oncology (ECRC), a body created from the ENCCA project. Composed of chairs of national societies and the leads of pan-European clinical trial groups, the ECRC aims to improve the coordination of paediatric and adolescent cancer clinical research activities as well as address many common challenges and identify solutions


​Ruth Ladenstein and Pam Kearns: Reaction to EU Clinical Trials Regulation proposal

It is widely recognised that the conduct of collaborative clinical trials across multiple Member States has been seriously impeded by the EU Clinical Trials Directive (2001/20/EC) and there is real potential for this to be reversed by the proposed EU Clinical Trials Regulation (CTR). Through ENCCA partner SIOPE, and the European Clinical Research Council (ECRC), a body created as a result of the ENCCA project, several dvocacy
actions will take place to ensure the needs of young people with cancer, and those who care for them, are considered. Assoc. Prof. Ruth Ladenstein and Prof. Pam Kearns will be integral to this advocacy process. Here they discuss their key concerns.


​Luisa Basset and Jacqueline Costello: Patient and Parent Partnerships

Luisa Basset and Jacqueline Costello, Members of the Parent Patient Advocacy Committee discuss the creation of the Parent-Patient Advocacy Committee, a key body created within ENCCA. Luiza is from Spain, Jacqueline is from Luxembourg and both are parents of long-term survivors of childhood cancer. Parent/ patient-professional partnerships are essential: therefore a committee composed of 7 parent representatives and 3 survivors from across Europe (view PPAC members) provide input on important topics such as informed consent to clinical trial participation, biobanking and tissue sampling. They also raising awarenessof the needs of the parent and patient childhood cancer community in Europe.


​Kathy Pritchard-Jones and Martin Schrappe: Bringing together expertise to optimise treatment and quality-of-life

ENCCA Activity Coordinators Kathy Pritchard-Jones and Martin Schrappe discuss the state of paediatric oncology in Europe today and why they were so motivated to play a leading role in ENCCA. Childhood and adolescent cancer can be considered a success story, as around 80% of patients in Europe will survive. But the intensive treatment acquired can result in many side effects. Moreover, major inequalities currently exist in the treatment and care provided across Europe. A long-term framework through ENCCA, needs to be established in order to move research treatment and care of young people to the next level.


​Riccardo Haupt and Lars Hjorth: Improving the lives of long-term survivors

Enhancing quality-of-life of the increasing number of survivors of childhood and adolescent cancer is one of the main goals of ENCCA and a related EU-funded project, PanCareSurFup. A particular advantage of both ENCCA and PanCareSurFup is that as rare cancers are the focus, the added-value of networking and sharing information and resources is a given. Many of the partners and experts are already work together and this ensures greater efficiency and success for these two interlinked projects. However, many of the new features of both projects have just started, such as the ‘survivorship passport’ and sustaining these initiatives in the long-term is a must.