Projects:

CCI Europe is keen to advance research and foster collaboration. Therefore, CCI Europe is coordinator or partner in the following third party funded project (EU, as well as non-EU).

If you want to learn more about the finalized projects, please check this page: FINALIZED PROJECTS

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.

Project website: https://beatcancer.eu/
Duration: Sept. 2022 – Aug. 2024
Grant Authority: European Health and Digital Executive Agency (HADEA)
Project Nr.: 101056918
Coordinator: CCI Europe

Co-funded by the European Union. Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union or the European Health and Digital Executive Agency (HaDEA). Neither the European Union nor the granting authority can be held responsible for them.

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.

Project website: Website
Duration: Jun 2022 – May 2025
Grant Authority: European Education and Culture Executive Agency
Project Nr.: 101056190
Coordinator: Accelerate

Funded by the European Union. Views and opinions expressed are however those of the author (s) only and do not necessarily reflect those of the European Union or EACEA. Neither the European Union nor the granting authority can be held responsible for them.

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.

Project website: https://siope.eu/POLARIS-Project
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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.

Project website: https://unica4.eu/
Duration: Jul 2022 – Dec 2023
Grant Authority: European Commission
Project Nr.: 101052609
Coordinator: SIOPE

UNICA4EU receives funding from the European Union’s Call for Pilot Projects and Preparatory Actions (PPPA) under Grant Agreement No. 101052609.

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.

Project website: https://uncan.eu/
Duration: Sept 2022 – Nov 2023
Grant Authority: European Health and Digital Executive Agency (HADEA)
Project Nr.:101069496
Coordinator: INSERM

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.

Project website: https://paedcan.ern-net.eu/
Duration: Jan 2023 – Dec 2027
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Coordinator: CCRI

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.

Project website: Website
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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.

Project website: https://pancarefollowup.eu/
Duration: Jan 2019 – Dec 2023
Grant Authority: Directorate-General for Research and Innovation (RTD)
Project Nr.: 824982
Coordinator: PMC

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 will be 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/.

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.

Project website: Website
Duration: Mar 2021 – Feb 2025
Grant Authority: Directorate-General for Research and Innovation (RTD)
Project Nr.:899999
Coordinator: UNIVERSITAETSMEDIZIN DER JOHANNES GUTENBERG-UNIVERSITAET MAINZ

PROTECT-EUROPE is an EU4Health Project that champions gender-neutral vaccination programme in EU Member States to provide protection for everyone against cancers caused by HPV e.g. cervical, anal, penile, vaginal, vulval and oropharyngeal.

ECO is coordinating this EU Project under the EU4Health Programme 2021-2027 and leading the project communication, dissemination and exploitation efforts in consultation with other 33 project partners.

Project website: Website
Duration: Jan 2023 – Dec 2024
Grant Authority: European Health and Digital Executive Agency (HADEA)
Project Nr.: 101080046
Coordinator: European Cancer Organisation (ECO)

smartCARE is developing a ‘Cancer Survivor Smart Card’. This digital tool decreases the communication gap between survivors and health and social-care providers. These providers promote citizen empowerment through patient-centered care and ultimately enhance the quality of life and of cancer survivors.

ECO is coordinating this EU Project under the EU4Health Programme 2021-2027, focused on sustainability and user needs.

Project website: Website
Duration: Jan 2023 – Dec 2024
Grant Authority: European Health and Digital Executive Agency (HADEA)
Project Nr.:101080048
Coordinator: European Cancer Organisation (ECO)

The aim of this project is to establish an international data integration platform to enable research and prioritise drug development for children with cancer. A decisive step towards systematic prioritization of new cancer therapies for children in Europe and beyond through a better use of, and access to, existing genomic and clinical data.

The platform aim is to collate and integrate more than 5,000 comprehensive genomics datasets for paediatric cancers that have been generated to date across the participating precision oncology programs. There are eight participating programmes from Europe, Canada and Australia.

CCI-E’s leads the WP7 (Patient Oversight and Advocacy) and contributes to the project on these tasks:

  • Coordination

Contribute to overall governance, as permanent member of the Management Committee (WP 1)

  • Reactive consultation

Act as sounding board on topics requiring patient input, across all WPs

  • Pro-active consultation

Identify, articulate and (help) remediate potential issues, throughout all WPs

  • Advocacy & communication

Contribute to internal and external communication and creation of support for the project

Website: https://www.pedcanportal.eu/
Duration:
Jan 2023 – December 2027

Grant Authority: Dietmar HOPP Foundation
Coordinator: German Cancer Research Center (DKFZ Heidelberg) & Hopp Children’s Cancer Center (KiTZ Heildelberg)

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