ideasIdea
Link every national cancer registry to tumour genomics
Join the national list of who got cancer to the genetic profile of each tumour, so we can see for the whole population which mutations matter and which drugs work for them.
Genomics England linked to the English cancer registry, and Nordic biobanks linked to registries, show the power of population-scale genomics with outcomes. Most countries with registries have no such linkage; genomic data sit in labs. The proposal funds registry-genomics linkage in every country with a population registry, using privacy-preserving tokens and structured genomic deposit, with governed access for real-world studies of biomarker-defined populations.
Hypothesis
Population-scale registry-genomics linkage will allow outcome analyses of biomarker-defined groups with fewer than 1 percent prevalence (for example, NRG1 fusions, rare KRAS alleles) within two years, which no trial or single-centre cohort can achieve.
Rationale
Rare-biomarker questions are exactly where randomised trials are infeasible; population registries are the only source of unbiased denominators.
What would test it
Link one national registry to structured genomic data from its major labs; publish outcome analyses for three rare biomarker-defined groups.
Maturity
being tested at scale
Who has to act
data
Cost to try
Large (over $50M)
Years to first evidence
4
Bottlenecks it attacks
- 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.
- 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.