Finalised Projects CCI Europe participated in
Here you find all finalised projects in which CCI Europe has been involved.
For the currently running projects, please go back to: RUNNING PROJECTS
Nothing about us without us! PPIE in paediatric oncology? That’s how it works!
PPIE stands for “Patient and Public in Involvement and Engagement”. Tailoring research to patients’ and survivors’ needs to improve quality of life (QoL) would be of great importance for this growing group of patients whose QoL depends on innovations in treatment and care. Unfortunately, PPIE has not yet fully reached paediatric oncological research. This project aims at finding out about prevailing knowledge and opinions towards PPIE – from both patients and health care professionals – and developing a training tool based on the findings.
„Nothing about us without us“ is a 1 year project which will be conducted starting in May 2021 in cooperation with the Medical University of Vienna, Department for Pediatrics and Adolescent Medicine.
It has been funded by the Ludwig Boltzmann Gesellschaft (LBG) and its implementation is supported by LBG Open Innovation in Science Center which provides consultations and experts workshops by their peer-network.
The Joint Action on Rare Cancers specifically focus on the implementation of the European Reference Networks in terms of research, innovation, education and state of the art information. CCI Europe is strongly involved in the development of Work Package (WP) 9 – Childhood Cancer- together with SIOP Europe, who took the lead of this WP.
The European Network for Cancer Research in Children and Adolescents (ENCCA) was the first network to integrate all stakeholders involved in the field of paediatric oncology. ENCCA created the basis for collaboration between paediatric oncologists, specialists, researchers and with parents/patients and survivors. Activities and initiatives developed in this project were carried on in further projects like the SURPASS tool, the Expo-r-Net project and the ERN PaedCan, as well as the SIOP Europe strategic plan).
The European Expert Paediatric Oncology Reference Network for Diagnostics and Treatment (ExPO-r-Net) set out the basis to build the European Reference Network in Paediatric Oncology. CCI Europe participated in this project as active partner to further develop the Survivorship Passport and to represent the interests of patients/parents and survivors.
The goal of PanCareLife was to improve the quality of life and opportunities for survivors of childhood cancer diagnosed before 25 years of age.
CCI Europe was responsible for disseminating existing research and the developed guidelines among the European survivors’ community.
PanCareFollowUp (PCFU) aimed to improve the quality of life for survivors of childhood cancer by bringing evidence-based, person-centred care to clinical practice in the real world. CCI Europe was responsible for knowledge sharing and dissemination within the PCFU. Furthermore, the survivors’ group of CCI Europe was involved in all tasks and developments throughout the project lifetime.
One of the results of the PanCarefollowup project was the so-called PLAIN brochures.
PLAIN stands for Person-centered, Lay-language, Accessible, International, Navigable and is based on the PanCareFollowUp guidelines for late effects. These guidelines are based on the IGHG guidelines (International Group for Guideline Harmonization for Late Effects of Childhood Cancer) and on the consensus (agreement) of various national guidelines.
Within the project, they were developed by the PanCare PLAIN information group. This group consisted of an interdisciplinary team of health care professionals and patient experts to ensure the accuracy and quality of the content on the one hand and to ensure that these brochures really meet the needs of patients and their families on the other.
The brochures were expanded in 2024 under the EU-CAYAS-NET project.
The brochures are now accessible for free on the PanCare Website under https://www.pancare.eu/plain-language-summaries/.
UNICA4EU‘s vision was to pave the foundation of the ecosystem that will facilitate the upscaling and wide-scale application of Artificial Intelligence to Paediatric Cancer in the next ten years, positioning Europe as the worldwide benchmark in the field. The initiative brought together the multi-disciplinary networks of stakeholders required to strengthen the reference knowledge base for the Paediatric Cancer investigation and promotion.
CCI Europe’s main role in the UNICA4EU project was to ensure that patients’, survivors’ and parents’ rights regarding data sharing and data use are being protected, and that their needs regarding patient friendly information and education about the use of AI technologies are met.
UNCAN.eu was an initiative started with an alliance of 21 member states that tried to understand cancer and its mechanisms better in order to improve cancer prevention, early diagnosis and treatment. Its deliverable was a blueprint for setting up a European Federated Cancer Research data hub where challenges in cancer research would be addressed.
CCI Europe had a role in representing childhood cancer patients and making sure we were involved in all aspects of the project, from expert committee groups to prioritization of patient needs.
