# An international consortium pooling the outcome of every treated child with cancer

Source: https://onco.cc/ideas/idea-data-paediatric-rwe-consortium/  
OnCo record `idea-data-paediatric-rwe-consortium` (Idea). Data CC BY-NC 4.0, attribute "Data from OnCo (onco.cc)"; commercial use needs a licence.

## TL;DR

Childhood cancers are rare, so no one country sees enough cases. Pool the treatment and outcome of every child treated anywhere into one governed dataset.

## Summary

Paediatric oncology already treats most children on or according to cooperative-group protocols, with structured data. Linking cooperative-group databases (COG, SIOP Europe, and LMIC networks) into one federated real-world resource, including children treated off-protocol and in LMICs, would allow toxicity, late effects and rare subtype questions to be answered globally. The proposal funds the governance, common data model and federation.

## Fields

- Kind: Idea
- Last checked: 2026-09-08
- Hypothesis: A pooled paediatric resource covering more than 80 percent of treated children in participating countries will answer rare-subtype and late-effect questions with cohorts five times larger than any current group and will be used to design the next generation of risk-adapted protocols.
- Rationale: Paediatric oncology's cooperative structure is unique; the data exist in silos separated by group and continent, not by lack of standardisation.
- Proposed test: Federate COG and SIOP databases for two diseases (neuroblastoma, Ewing sarcoma); answer three pre-registered questions and report the marginal value of pooling.
- Maturity: early-clinical
- Actor: research

## Sources

- Bottleneck evidence (Weak real-world evidence and registries): Gyawali, Hey & Kesselheim, Assessment of the clinical benefit of cancer drugs receiving accelerated approval (JAMA Intern Med 2019): https://doi.org/10.1001/jamainternmed.2019.0462

## Connected records

- cancers: [Neuroblastoma (paediatric)](https://onco.cc/cancers/neuroblastoma/), [Sarcomas (soft tissue, bone, GIST)](https://onco.cc/cancers/sarcoma/)
- fronts: [AI & Computation](https://onco.cc/fronts/ai-computation/)
- companies: [Children's Oncology Group (COG)](https://onco.cc/companies/childrens-oncology-group/)
- bottlenecks: [Data silos](https://onco.cc/bottlenecks/b-data-silos/), [Rare and paediatric cancers without markets](https://onco.cc/bottlenecks/b-rare-cancers/), [Weak real-world evidence and registries](https://onco.cc/bottlenecks/b-real-world-evidence/)
- key papers: [Assessment of the Clinical Benefit of Cancer Drugs Receiving Accelerated Approval](https://onco.cc/key-papers/paper-gyawali-jama-intern-med/)
- roadmaps: [Paediatric oncology roadmap: cooperative-group cures → engineered immunity → drugs developed for children first](https://onco.cc/roadmaps/paediatric-oncology-roadmap/)

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