Projects:

CCI Europe is keen to advance research and foster collaboration. Therefore, CCI Europe is included in following EU, as well as non-EU funded projects:

EU-CAYAS-NET

European Youth Cancer Survivors Network
European Youth Cancer Survivors Network

The EU-funded project “EU-CAYAS-NET” aims at developing a “European Youth Cancer Survivors Network” alongside an interactive virtual platform. The network will foster social networking, peer-support, knowledge-exchange, and aims at improving:

  • the quality of life of survivors (including mental health, education & career support, follow-up care and transition),
  • the care for adolescents and young adults (AYA) with cancer, and
  • Equality, Diversity and Inclusion (EDI) along the whole treatment and survivorship trajectory.

EU-CAYAS-NET is the first EU project that is coordinated by CCI Europe, in a joint effort with Youth Cancer Europe.

Duration: Sept 2022 – Aug 2024

The aim of ALADDIN 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.

CCI Europe ensures proper dissemination and promotion of the project and its results among young patients, parents and citizens, as well as contributing to building up material for the Online Educational Platform and identification of patient advocates for educational activities.

Duration: Jun 2022 – May 2025

POLARIS is a partnership project to develop a set of communication tools that ALL (Acute Lymphoblastic Leukemia) medical teams can use to explain ALL treatment protocols, medical terminology and investigations, guidance and results to patients/caregivers in an easy to understand visual language.

In this project, CCI Europe contributes the patient and parent view to this patient-centric communication tool.

UNICA4EU‘s vision is 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 will bring 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 will be 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.

Duration: Jul 2022 – Jun 2023

UNCAN.eu is an initiative started with an alliance of 21 member states that will try to understand cancer and its mechanisms better in order to improve cancer prevention, early diagnosis and treatment. Its deliverable will be a blueprint for setting up a European Federated Cancer Research data hub where challenges in cancer research will be addressed.

CCI Europe has a role in representing childhood cancer patients and making sure we are involved in all aspects of the project, from expert committee groups to prioritization of patient needs.

Duration: Sept 2022 – Nov 2023

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.

Duration: Jan 2019 – Dec 2024

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.

Duration: Mar 2021 – Feb 2025

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.

Duration: Apr 2021 – 2022

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.

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.