An international consortium pooling the outcome of every treated child with cancer
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.
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.
- Weak real-world evidence and registries · We do not reliably know what happens to patients after approval, so we cannot tell which drugs deliver in practice.
- Rare and paediatric cancers without markets · Taken together rare cancers are a fifth of all cancers, but each one alone is too small for a company to invest in.
- Data silos · Records, scans, genomes and outcomes sit in separate systems that cannot talk. Every patient's experience is lost to the next.
Pages like this
not linked directly; found by shared links- IdeaEscrow a share of adult revenue until the paediatric study is done
Shares Children's Oncology Group (COG), Neuroblastoma (paediatric), Rare and paediatric cancers without markets, Sarcomas (soft tissue, bone, GIST).
- IdeaOne legal framework for pooling rare cancer data across borders
Shares Data silos, Rare and paediatric cancers without markets, Sarcomas (soft tissue, bone, GIST).
- IdeaMake paediatric combination studies part of every relevant adult cancer drug approval
Shares Children's Oncology Group (COG), Neuroblastoma (paediatric), Rare and paediatric cancers without markets.
- IdeaA national cancer data space with one legal front door
- IdeaPublic data-quality scorecards for every cancer centre
- IdeaPay a prize for rare cancer drugs instead of hoping for a market
Shares Neuroblastoma (paediatric), Rare and paediatric cancers without markets, Sarcomas (soft tissue, bone, GIST).
- IdeaOpen-source drug discovery to clinical proof of concept for neglected cancers
Shares Neuroblastoma (paediatric), Rare and paediatric cancers without markets, Sarcomas (soft tissue, bone, GIST).
- IdeaAdvance market commitments for paediatric and rare cancer drugs
Shares Children's Oncology Group (COG), Neuroblastoma (paediatric), Rare and paediatric cancers without markets, Sarcomas (soft tissue, bone, GIST).