Advancing Global Collaboration in Childhood Cancer Research: Data Resource Mapping and Federated Network Matrix

In November 2023, the US National Cancer Institute (NCI) (with support from NAACCR) and the French National Cancer Institute (INCa) co-sponsored the Paris Conference for an International Childhood Cancer Data Partnership. Organized within the framework of the first working group of the G7 Cancer Initiative and supported by the European Commission, the meeting brought together more than 200 experts and institutions committed to addressing persistent challenges in pediatric cancer research—particularly those related to data availability, quality, and interoperability.

A central issue in global childhood cancer research is the rarity of these diseases. Many countries lack sufficient case numbers to conduct comprehensive studies, especially for rare and ultra-rare tumor types. As a result, pooling and sharing clinical, demographic, molecular, and imaging data across institutions and borders is essential. The International Childhood Cancer Data Partnership was established to facilitate this collaboration by connecting countries with high-quality data and a willingness to contribute to shared research goals.

To advance this work, G7 Cancer’s Working Group 1—co-led by the NCI and INCa and dedicated to developing an international data strategy that focuses on pediatric cancers as a model—launched several specialized workstreams. Two of these have now produced key resources to help the global community better understand the landscape of available data and opportunities for collaboration.

Data Resource Mapping Survey and Spreadsheet

Last year, organizations worldwide were invited to complete a detailed survey describing the childhood cancer data currently collected within their country or institution. The resulting spreadsheet provides an overview of existing national and regional resources, highlighting data types, collection systems, governance structures, and areas where capacity building may be most impactful. The compiled spreadsheet serves as a foundational reference to support future research partnerships and identify gaps where additional data consolidation may be beneficial.

Any institution or registry wishing to contribute information about their childhood cancer data resources is encouraged to complete the survey using this link.

Federated Network List

Another workstream compiled a comprehensive list of federated networks, related data initiatives, synthetic data projects, translational research efforts, and other relevant infrastructures. Rather than a conceptual matrix, this spreadsheet provides practical, structured entries—including network type, data model, governance, technical partners, status, and scope. The list is intended to help partners quickly understand existing models and activities globally, identify potential points of connection, and explore how federated or decentralized approaches are being applied across different regions and data types.

Download the Resources

• Data Resource Mapping Spreadsheet
• Federated Network List

We encourage all partners, researchers, and organizations to explore these resources and share them within their networks. Together, these tools represent an important step toward strengthening global data connectivity and accelerating progress for children with cancer worldwide.

This work was led by:

Betsy Kohler – retired – North American Association of Central Cancer Registries (NAACCR) – USA
Eva Steliarova-Foucher – International Agency for Research on Cancer (IARC) – France
Fernanda Silva Michels – North American Association of Central Cancer Registries (NAACCR) – USA
Gijs Geleijnse – Netherlands Comprehensive Cancer Organization – The Netherlands
Lionel Lafay – French National Cancer Institute (INCa) – France
Lynne Penberthy – retired – National Cancer Institute (NCI) – USA
Serban Negoita – National Cancer Institute (NCI) – USA