{"entity":{"id":"idea-data-paediatric-rwe-consortium","kind":"idea","name":"An international consortium pooling the outcome of every treated child with cancer","aka":[],"tldr":"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.","asOf":"2026-09-08","links":[{"label":"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)","url":"https://doi.org/10.1001/jamainternmed.2019.0462"}],"tags":[],"related":[],"cancers":["neuroblastoma","sarcoma"],"sections":["ai-computation"],"technologies":[],"targets":[],"drugs":[],"companies":["childrens-oncology-group"],"institutions":[],"pathways":[],"terms":[],"trials":[],"people":[],"bottlenecks":["b-real-world-evidence","b-rare-cancers","b-data-silos"],"keyPapers":["paper-gyawali-jama-intern-med"],"journals":[],"dependsOn":[],"notes":[],"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.","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","cost":"medium","horizonYears":4},"route":"/ideas/idea-data-paediatric-rwe-consortium/","neighbours":{"cancer":[{"id":"neuroblastoma","kind":"cancer","name":"Neuroblastoma (paediatric)","route":"/cancers/neuroblastoma/"},{"id":"sarcoma","kind":"cancer","name":"Sarcomas (soft tissue, bone, GIST)","route":"/cancers/sarcoma/"}],"section":[{"id":"ai-computation","kind":"section","name":"AI & Computation","route":"/fronts/ai-computation/"}],"company":[{"id":"childrens-oncology-group","kind":"company","name":"Children's Oncology Group (COG)","route":"/companies/childrens-oncology-group/"}],"bottleneck":[{"id":"b-data-silos","kind":"bottleneck","name":"Data silos","route":"/bottlenecks/b-data-silos/"},{"id":"b-rare-cancers","kind":"bottleneck","name":"Rare and paediatric cancers without markets","route":"/bottlenecks/b-rare-cancers/"},{"id":"b-real-world-evidence","kind":"bottleneck","name":"Weak real-world evidence and registries","route":"/bottlenecks/b-real-world-evidence/"}],"paper":[{"id":"paper-gyawali-jama-intern-med","kind":"paper","name":"Assessment of the Clinical Benefit of Cancer Drugs Receiving Accelerated Approval","route":"/key-papers/paper-gyawali-jama-intern-med/"}],"roadmap":[{"id":"paediatric-oncology-roadmap","kind":"roadmap","name":"Paediatric oncology roadmap: cooperative-group cures → engineered immunity → drugs developed for children first","route":"/roadmaps/paediatric-oncology-roadmap/"}]}}