CHILDHOOD CANCER INTERNATIONAL

Their core work

Childhood Cancer International (CCI) is a global umbrella NGO representing national childhood cancer patient and parent organizations, giving childhood cancer survivors a collective voice in research and policy. In H2020 research consortia, CCI contributes the patient and survivor community perspective — ensuring that clinical guidelines, care models, and digital health tools are shaped by the people who must live with long-term effects of cancer treatment. Their specific contributions span person-centred care framework development, patient engagement in clinical guideline design, and real-world implementation of survivorship care tools. They serve as the bridge between the research community and the survivor population, validating that solutions are acceptable and usable by actual patients.

What they specialise in

How they've shifted over time

CCI's early H2020 participation focused on the human and clinical dimensions of survivorship — person-centred care models, lifestyle interventions, and clinical practice guidelines for adult survivors. As their involvement progressed, the emphasis shifted sharply toward digital health implementation: electronic health records, interoperability, and the scale-up of a digital Survivorship Passport. This reflects a broader maturation from shaping what good care looks like, to ensuring the digital infrastructure exists to deliver it at scale across health systems.

CCI is moving from advocacy and guideline co-design toward active participation in digital health implementation and interoperability projects, making them an increasingly relevant partner for eHealth and patient-reported outcomes initiatives.

How they like to work

CCI participates exclusively as a consortium partner — never as project coordinator — which reflects their role as a specialist contributor rather than a research lead. Despite this, they bring exceptional network reach: 27 unique partners across 13 countries from just two projects, indicating that their participation signals credibility and opens doors to the broader PanCare survivor research community. Consortia value them for the legitimacy and patient access they provide, not for research infrastructure.

CCI has collaborated with 27 unique partners across 13 countries, a wide reach for an organization with only two H2020 projects, reflecting their position within the established PanCare pan-European network for childhood cancer survivor research. Their network is predominantly European but their organizational mandate is global, giving them connections to survivor communities well beyond EU borders.

What sets them apart

CCI occupies a position no academic or clinical institution can replicate: they ARE the organized survivor community, not just a proxy for it. Where a hospital can model patient experience, CCI can mobilize actual survivor networks across continents to participate in, validate, and disseminate research. For any consortium building around cancer survivorship, long-term follow-up, or patient-reported outcomes, CCI's involvement converts a research exercise into a community-endorsed initiative — a meaningful advantage in both clinical translation and EU evaluation scoring.

Highlights from their portfolio

• PanCareFollowUp
  The larger of the two projects (€80K EC contribution) and the foundation of CCI's H2020 profile, targeting the full care quality lifecycle for childhood cancer survivors through patient-centred guidelines and lifestyle interventions.
• PanCareSurPass
  Represents CCI's pivot into digital health — scaling a digital Survivorship Passport across European health systems, combining implementation science, EHR interoperability, and real-world patient adoption in a single project.