A national late-effects registry linking treatment exposures to outcomes decades later
We know surprisingly little about what happens to cancer survivors twenty years on. Linking their treatment records to later health records would show which treatments cause which problems and who needs watching.
Childhood cancer survivor cohorts (CCSS in the US, BCCSS in the UK, DCOG-LATER in the Netherlands) transformed understanding of late effects. Adult survivors have no equivalent at scale. A national registry linking cancer registry treatment data (including radiotherapy doses and cumulative drug doses) to hospital, prescribing, and mortality records would generate late-effect risks for modern therapies, including immunotherapy and targeted agents, whose long-term effects are unknown.
- Survivorship and late effects are neglected · Tens of millions of people live after cancer with heart damage, infertility, second cancers and fear, and few services.
- 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.
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not linked directly; found by shared links- IdeaAutomatic weekly linkage of cancer registries to deaths, prescriptions and imaging
Shares SEER (Surveillance, Epidemiology, and End Results), Weak real-world evidence and registries, Data silos.
- IdeaMake a population cancer registry a condition of every cancer aid programme
Shares SEER (Surveillance, Epidemiology, and End Results), Weak real-world evidence and registries, Data silos.
- IdeaA national cancer data space with one legal front door
- IdeaPublic data-quality scorecards for every cancer centre
- IdeaRecord and publish the symptom-to-diagnosis interval for every cancer, by hospital
Shares SEER (Surveillance, Epidemiology, and End Results), Weak real-world evidence and registries.
- IdeaNo mCODE, no payment: tie oncology reimbursement to a minimal structured record
- IdeaA public tracker of how long each country takes to adopt new evidence
Shares SEER (Surveillance, Epidemiology, and End Results), Weak real-world evidence and registries.
- IdeaCheap long-term survival follow-up by linking trial participants to registries
Shares SEER (Surveillance, Epidemiology, and End Results), Weak real-world evidence and registries.