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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.
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.
Shares Mesothelioma, Rare and paediatric cancers without markets, Sarcomas (soft tissue, bone, GIST).
Shares Data silos, Rare and paediatric cancers without markets, Sarcomas (soft tissue, bone, GIST).
Shares Rare and paediatric cancers without markets, Sarcomas (soft tissue, bone, GIST).
Shares Rare and paediatric cancers without markets, Sarcomas (soft tissue, bone, GIST).
Shares Rare and paediatric cancers without markets, Sarcomas (soft tissue, bone, GIST).
Shares Mesothelioma, Rare and paediatric cancers without markets, Sarcomas (soft tissue, bone, GIST).
Shares Rare and paediatric cancers without markets, Sarcomas (soft tissue, bone, GIST).