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
About the project:
PanCare4AYA will develop an international clinical guideline for surveillance and Survivorship Care, and develop and test a screening programme for AYA cancer survivors to make long-term Survivorship care easier to achieve across Europe. This project will be led by prof. Leontien Kremer in collaboration with dr. Heleen van der Pal from the Princess Máxima Center for pediatric oncology in the Netherlands and will be a collaboration between 29 partners from 14 countries.
The project will build upon the results of the PanCareFollowUp project and guidelines from the International Guideline Harmonization Group and the PanCare network to translate knowledge on guideline based long-term Survivorship Care for childhood cancer survivors to AYA cancer survivors.
Project Objectives:
The project will:
- Develop an international, evidence- and consensus-based guideline for AYA cancer Survivorship Care (screening and follow-up), and develop supportive PLAIN language brochures based on the guideline
- Develop the person-centred AYA Cancer Survivor Screen programme to apply the AYA cancer Survivorship Care guideline in practice, including a Programme Manual with a Survivorship Care Plan (SCP) template (including Treatment Summary), supporting materials for survivors and healthcare professionals (HCPs) to implement the AYA Cancer Survivor Screen programme and an implementation strategy
- Develop support tools for the AYA Cancer Survivor Screen programme, including AYA survivor peer support networks, AYA-specific versions of existing digital tools for Survivorship and a guide for developing digital tools for Survivorship Care.
- Conduct an implementation study of the person-centred AYA Cancer Survivor Screen programme in 11 European countries with 1,000 AYA cancer survivors, to assess the impact of the programme on:
- Empowerment, mental, psychosocial, QoL outcomes
- Healthcare delivery and screening-related health
- Experiences of AYA cancer survivors and HCPs with implementing the state-of-the-art screening programme within a range of different healthcare settings,
- Feasibility, and
- Costs for healthcare systems.
- Contribute to the “Quality of Life” cluster for the Mission on Cancer and establish links with other (EU) initiatives in AYA cancer Survivorship Care to avoid duplication of effort and maximise synergies
- Develop a Replication Toolkit for the AYA Cancer Survivor Screen programme to support scale-up of the AYA Cancer Survivor Screen programme across Europe
- Communicate and disseminate the importance of screening in AYA cancer Survivorship Care and the project results to key stakeholders to promote scale-up of the AYA Cancer Survivor Screen programme and improve AYA cancer Survivorship Care across Europe
PanCare4AYA will be a 5-year programme bringing together many partners from all over Europe and connecting the childhood and AYA cancer communities to jointly improve survivorship care for all survivors treated from 0-39 years of age.
Project website: https://pancare4aya.eu/
Duration: Apr 2025 – May 2030
Grant Authority: European Health and Digital Executive Agency (HADEA)
Project Nr.: 101213107
Coordinator: Princess Máxima Center for pediatric oncology
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.
YARN, the European Youth Cancer Network, is an ambitious, EU co-funded initiative bringing together a diverse group of stakeholders: young people with cancer experience, healthcare professionals, psychosocial care specialists, policy-makers, researchers, and patient organisations.
Spanning 25 EU Member States and 3 eligible neighbouring countries, and delivered by 19 Beneficiaries, 1 Affiliated Entity, and 39 Associated Partners, YARN is the largest multi-stakeholder, lived experience-driven effort of its kind in Europe to improve quality of life for children, adolescents, and young adults affected by cancer.
Project website: beatcancer.eu
Duration: Jul 2025 – Jun 2028
Grant Authority: European Health and Digital Executive Agency (HADEA)
Project Nr.: 101219053
Coordinator: Youth Cancer 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.
Symmetrian is a platform where one can find patient experts that can give relevant input into many research initiatives and R&D processes. It bridges the gap between patient experts and a wide range of research initiatives. It connects relevant research and investigative activities with suitable patient experts, facilitating impactful patient-centred collaborations in order to improve research outcomes.
Project website: https://symmetrian.org/
Duration:
Coordinator: European Patient Advocacy Institute
An estimated 1 in 20 Europeans has now faced a cancer diagnosis. This disease not only takes a toll on the body but also weighs heavily on mental health. Patients undergoing cancer treatment as well as survivors, after their treatment, often face a cascade of psychological and cognitive challenges, including anxiety, depression, fear, and uncertainty. This can severely impact the quality of life for patients, their families and caregivers.
Unfortunately, psychological support is often lacking due to inequalities in access and the lingering stigma surrounding mental health. Many patients, especially those from underserved regions or disadvantaged backgrounds, do not receive adequate mental health screening or care.
ALTHEA works to address these issues.
Solutions exist. Systematic mental health screening ensures that patients are given timely access to psychological support. And early intervention is key. By recognising warning signs, healthcare professionals can intervene sooner, preventing emotional distress from escalating and providing more personalised care.
ALTHEA aims to provide high-quality, remote, psychological support through digital platforms. By designing software that can be easily used on simple devices, we ensure that the tool is accessible in remote regions and to those with limited access to technology.
Beyond supporting patients, ALTHEA will develop guidance and best practices for oncology professionals, promoting a collaborative approach between them and mental health professionals. By cementing mental health support in the cancer pathway, ALTHEA is setting a new standard for comprehensive cancer care.
Project Website: https://www.ieo.it/en/PNA/Althea-Project/
Duration: 2024 – 2027
Grant Authority: European Health and Digital Executive Agency (HaDEA)
Project Nr.: 101161236
Coordinator: IEO European Institute of Oncology
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 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)
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
Grant Authority:
Project Nr.:
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.
