Projects:

CCI Europe is keen to advance researach and foster collaboration.
Therefore, CCI Europe is included in following EU funded projects:

The ERN PaedCan is focusing on reducing inequalities in treatment of childhood cancer and focusing on improving follow-up care for survivors through fostering the further development of the Survivorship passport (SURPASS) tool.

CCI Europe is in the Steering Committee of the ERN PaedCan and strongly involved in all project activities. So far, CCI Europe developed a roadmap for parents’ and survivors’ groups within the network and a movie to raise awareness of late-effects.

As a public-private network, Harmony uses the benefits of big data to speed up the development of improved treatments for patients and more effective treatment strategies. CCI Europe is actively involved in representing patients’ rights and voicing the interest of the patients across all activities of the network.

PanCareFollowUp (PCFU) aims 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 is responsible for knowledge sharing and dissemination within the PCFU. Furthermore, the survivors’ group of CCI Europe is involved in all tasks and developments throughout the project lifetime.

PanCareSurPass (PCSP) will look at implementation of the digital Survivorship Passport (http://www.survivorshippassport.org/) tool to improve person-centred care for survivors of childhood and adolescent cancer in Austria, Belgium, Germany, Italy, Lithuania and Spain. Through the tool, survivors and their healthcare providers will receive a detailed Treatment Summary and a personalised Survivorship Care Plan, based on evidence-based international clinical guidelines. The project will also develop materials to support future replication in new countries in the future.
CCI Europe is actively inputting into the research being conducted and will be a key partner in communicating the project to survivor groups across Europe.

The remit and detailed objectives of ACCELERATE have been described in “Creating a unique, multi-stakeholder Paediatric Oncology Platform to improve drug development for children and adolescents with cancer”:

  • To accelerate science driven development of paediatric oncology drugs.
  • To facilitate international cooperation and collaboration between all stakeholders.
  • To improve early access to new anticancer drugs in development for children and adolescents.
  • To set-up long-term follow-up (LTFU) of children and adolescents exposed to new drugs.

Partner – Paediatric Rare Tumours Network is a 3-year project part of the European Reference Network for Paediatric Cancer aiming at creating a Paediatric Rare Tumour European Registry dedicated to children and adolescents with Very Rare Tumours linking existing national registries and to provide a registry for those countries not already having a registry for VRT in place.

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.

Past projects CCI Europe participated in:

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.