PROJECTS

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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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

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

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 European Standards of Care for Children with Cancer should represent the minimum standards of care that should be implemented at the European level, and today after more than 10 years since its release, childhood cancer is under the spotlight on the EU agenda which signifies a moment to evaluate and update the document with the aim to further reduce health inequalities across Europe. Hence, CCI-E and SIOPE have conducted a survey among their members to evaluate the current Standards of Care and accordingly revise the document that would be published in the following months.

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)

Website: https://www.eu4healthforum.com/
Duration: 2024 – 2025
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Website: https://oncoolympics.com/