ideasIdea
One legal framework for pooling rare cancer data across borders
Rare cancers are too uncommon for any country to learn from alone. Agree one set of rules so records from many countries can be combined.
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.
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.
What would test it
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
Who has to act
policy
Cost to try
Medium ($1M to $50M)
Years to first evidence
3
Bottlenecks it attacks
- Data silos · Records, scans, genomes and outcomes sit in separate systems that cannot talk. Every patient's experience is lost to the next.
- 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.