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.

PanCareSurFup focused on the development of research studies for late effects and the establishment of follow-up guidelines as well as the dissemination of results.

CCI Europe was responsible for disseminating existing research and the developed guidelines among the European survivors’ community.