News from ERN PaedCan project

28/07/2026

New clinical guidelines, expanded knowledge exchange and stronger European cooperation mark the network’s continued progress

The European Reference Network for Paediatric Cancer (ERN PaedCan) continues to support more equitable, harmonised and high-quality paediatric cancer care across Europe through the development of clinical standards, knowledge exchange and collaboration between specialist centres.

Advancing standards for paediatric cancer care

A key recent development is the launch of six new European Standard Clinical Practice (ESCP) guidelines. The ESCP initiative aims to support healthcare professionals, institutions and national stakeholders by providing practical standards and recommendations for childhood cancer entities.

The guidelines cover a range of rare and complex paediatric cancer entities, including adrenal and extra-adrenal paraganglioma in children and adolescents, carcinomas and carcinoid tumours of the bronchi and lungs, choroid plexus tumours, neuroendocrine tumours of the appendix, non-appendiceal gastroenteropancreatic neuroendocrine neoplasms, and palliative care. These new ESCP guideline documents are available on the ERN PaedCan website.

Supporting the future of European Reference Networks

ERN PaedCan continues to contribute to the wider development of the European Reference Networks. The 24th meeting of ERN Coordinators with the European Commission’s DG SANTE team took place in Luxembourg on 20 May 2026, followed by a joint meeting between ERN Coordinators, the Board of Member States and the advisory group of Hospital Managers on 21 May 2026.

Key topics discussed included the HLM4RARE declaration, interim reporting and project monitoring of ongoing ERN grants, the growing exchange of best practices across ERNs, CPMS 2.0, ERN registries, preparation for the European Health Data Space, and the revision of the ERN evaluation methodology.

These discussions highlight the continued development of the ERN ecosystem and the importance of collaboration, shared learning and coordinated action across European healthcare networks.

Strengthening digital collaboration and knowledge exchange

ERN PaedCan is also continuing to advance digital collaboration through CPMS 2.0, the platform that enables specialists across Europe to collaborate on complex clinical cases.

A new pilot project is enabling integration between hospital IT systems and CPMS 2.0, with the aim of reducing manual data entry and facilitating more efficient cross-border clinical collaboration. Future plans to transition CPMS 2.0 towards an open-source model are expected to support external stakeholders in using and adapting the system.

Knowledge exchange between healthcare professionals remains a central part of ERN PaedCan’s work. Through initiatives supporting professional collaboration and international exchange, the network continues to strengthen the sharing of specialised paediatric oncology expertise across Europe.

Building expertise through education and collaboration

The ERN PaedCan General Assembly 2026 took place in Glasgow, United Kingdom, during the SIOPE Annual Meeting 2026. The meeting brought together members to discuss ongoing activities and future development of the ERN ecosystem, including updates on ERN monitoring activities, CPMS 2.0 developments, educational and exchange opportunities, ESCP guidelines, collaborations with CCI Europe and activities related to Very Rare Tumours.

Continuing its commitment to education and international exchange, ERN PaedCan is also preparing the 2027 Interactive Webinar Series: Most Challenging Cases in Paediatric Oncology, organised together with Young SIOPE.

Since its successful launch in 2021, the series has become a cornerstone of engaging education and international exchange. The 2027 programme will feature seven challenging and educational clinical cases, presented by young oncologists and followed by live discussions with experts in the field. For more information about the application process, visit here.

A growing European network for childhood cancer care

The continued progress of ERN PaedCan reflects the broader impact of the European Reference Networks since their creation in 2017. A review published in the Orphanet Journal of Rare Diseases highlights the evolution and impact of ERNs as a flagship European initiative connecting more than 1,600 expert centres across 375 hospitals in EU Member States and Norway.

Among the achievements highlighted are more than 4,900 complex cross-border cases discussed through CPMS, over 530 clinical guidelines and recommendations developed, and more than 1,030 educational webinars delivered between 2020 and 2024.

The publication demonstrates the central principle behind the ERN model: enabling expertise to travel across borders rather than requiring patients themselves to travel to access specialised knowledge.

Through shared clinical standards, digital collaboration and professional exchange, ERN PaedCan continues to strengthen cooperation across Europe and support improved access to specialised paediatric cancer expertise for children and families.