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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.
Shares Enrol every new systemic therapy into a registry linkage that will still report in thirty years, Registries count diagnoses and deaths, and not what treatment left behind, Supportive care and survivorship roadmap: making treatment bearable → proving it extends life → caring for tens of millions afterwards, Survivorship and late effects are neglected.
Shares Registries count diagnoses and deaths, and not what treatment left behind, St Jude Lifetime Cohort Study (SJLIFE), How much illness childhood cancer survivors carry, and at what age, Weak real-world evidence and registries.
Shares SEER (Surveillance, Epidemiology, and End Results), Weak real-world evidence and registries, Data silos.
Shares Registries count diagnoses and deaths, and not what treatment left behind, St Jude Lifetime Cohort Study (SJLIFE), How much illness childhood cancer survivors carry, and at what age, Data silos.
Shares Registries count diagnoses and deaths, and not what treatment left behind, St Jude Lifetime Cohort Study (SJLIFE), How much illness childhood cancer survivors carry, and at what age, Survivorship and late effects are neglected.
Shares How much illness childhood cancer survivors carry, and at what age, Supportive care and survivorship roadmap: making treatment bearable → proving it extends life → caring for tens of millions afterwards, Survivorship and late effects are neglected.
Shares SEER (Surveillance, Epidemiology, and End Results), Weak real-world evidence and registries, Data silos.
Shares Registries count diagnoses and deaths, and not what treatment left behind, SEER (Surveillance, Epidemiology, and End Results), Survivorship and late effects are neglected.