{"entity":{"id":"idea-data-cross-border-rare-cancer-pool","kind":"idea","name":"One legal framework for pooling rare cancer data across borders","aka":[],"tldr":"Rare cancers are too uncommon for any one country to learn from alone, and national legal differences stop registries pooling records. A standing framework with a common data model, one joint controller agreement, federated queries and GA4GH access passports would let rare cancer registries in the EU, UK, US and Asia be queried as one, then extended to LMIC partners.","summary":"The European Reference Networks (EURACAN, PaedCan) connect rare cancer experts but face national legal differences for data pooling. The proposal is a standing legal and technical framework (common data model, single joint controller agreement, federated queries, GA4GH passports for access) so that rare cancer registries in the EU, UK, US and Asia can be queried as one, extended to LMIC partners.","asOf":"2026-09-08","links":[{"label":"EURACAN","url":"https://euracan.eu/"}],"tags":[],"related":[],"cancers":["sarcoma","mesothelioma"],"sections":["ai-computation"],"technologies":[],"targets":[],"drugs":[],"companies":[],"institutions":[],"pathways":[],"terms":[],"trials":[],"people":[],"bottlenecks":["b-data-silos","b-rare-cancers"],"keyPapers":[],"journals":[],"dependsOn":[],"notes":[],"hypothesis":"Pooled cross-border rare cancer data will allow outcome analyses on cohorts ten times larger than any national dataset and shorten time to a natural-history baseline for a new rare cancer trial from years to months.","rationale":"For diseases with a few hundred cases a year per country, only pooling produces evidence; the rare-disease field (RD-Connect, Orphanet) has built the legal template.","test":"Pool five national sarcoma registries under the framework; answer three pre-registered questions on sarcoma subtypes with fewer than 100 cases per country per year.","maturity":"early-clinical","actor":"policy","cost":"medium","horizonYears":3},"route":"/ideas/idea-data-cross-border-rare-cancer-pool/","neighbours":{"cancer":[{"id":"mesothelioma","kind":"cancer","name":"Mesothelioma","route":"/cancers/mesothelioma/"},{"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/"}],"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/"}]}}