# Link every national cancer registry to tumour genomics

Source: https://onco.cc/ideas/idea-data-registry-genomics-linkage-programme/  
OnCo record `idea-data-registry-genomics-linkage-programme` (Idea). Data CC BY-NC 4.0, attribute "Data from OnCo (onco.cc)"; commercial use needs a licence.

## TL;DR

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.

## Summary

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.

## Fields

- Kind: Idea
- Last checked: 2026-09-08
- 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.
- Proposed test: 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
- Actor: data

## Sources

- Genomics England: https://www.genomicsengland.co.uk/

## Connected records

- collections: [AACR Project GENIE](https://onco.cc/collections/genie/), [SEER (Surveillance, Epidemiology, and End Results)](https://onco.cc/collections/seer/)
- ideas: [Every tumour genomic report machine-readable and deposited nationally](https://onco.cc/ideas/idea-data-structured-genomic-reports/)
- fronts: [AI & Computation](https://onco.cc/fronts/ai-computation/)
- terms: [Next-generation sequencing (NGS)](https://onco.cc/terms/ngs/)
- technologies: [Whole-exome & whole-genome sequencing](https://onco.cc/technologies/wes-wgs/)
- bottlenecks: [Data silos](https://onco.cc/bottlenecks/b-data-silos/), [Rare and paediatric cancers without markets](https://onco.cc/bottlenecks/b-rare-cancers/), [Weak real-world evidence and registries](https://onco.cc/bottlenecks/b-real-world-evidence/)

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