{"entity":{"id":"idea-moon-adult-late-effects-registry","kind":"idea","name":"A lifelong late-effects registry linked to every treatment for adult survivors","aka":[],"tldr":"Children treated for cancer are followed for decades in a study that has changed how they are treated. Adults have nothing similar. Build it.","summary":"The Childhood Cancer Survivor Study transformed paediatric protocols by quantifying late cardiac, second-cancer and endocrine effects. Adult survivors, now over 18 million in the US alone, lack systematic long-term follow-up linked to treatment exposures, so late effects of immunotherapy, antibody-drug conjugates and modern radiotherapy are unknown. The proposal is a national registry linking treatment records, PROs and administrative outcomes for all adult survivors with consent, with open access for research.","asOf":"2026-09-08","links":[{"label":"Bottleneck evidence (Toxicity and quality of life are undervalued): Di Maio et al., Symptomatic toxicities experienced during anticancer treatment: agreement between patient and physician reporting (JCO 2015)","url":"https://doi.org/10.1200/JCO.2014.57.9334"}],"tags":[],"related":[],"cancers":[],"sections":[],"technologies":[],"targets":[],"drugs":[],"companies":[],"institutions":["karolinska","nci"],"pathways":[],"terms":[],"trials":[],"people":[],"bottlenecks":["b-toxicity-qol","b-survivorship"],"keyPapers":["paper-di-maio-j-clin-oncol"],"journals":[],"dependsOn":[],"notes":[],"hypothesis":"Within ten years the registry quantifies late effects for at least twenty modern regimens and leads to at least three changes in guideline dosing or surveillance.","rationale":"Late effects are invisible in trials that end at five years; only linked long-term data reveal them, and the paediatric precedent shows the payoff.","test":"Build in one country with existing registries (Nordic model) and demonstrate linkage completeness and first late-effect estimates within three years.","maturity":"early-clinical","actor":"data","cost":"medium","horizonYears":5},"route":"/ideas/idea-moon-adult-late-effects-registry/","neighbours":{"institution":[{"id":"karolinska","kind":"institution","name":"Karolinska University Hospital","route":"/institutions/karolinska/"},{"id":"nci","kind":"institution","name":"National Cancer Institute (NIH)","route":"/institutions/nci/"}],"bottleneck":[{"id":"rejuv-agenda-late-effects-are-not-counted","kind":"bottleneck","name":"Registries count diagnoses and deaths, and not what treatment left behind","route":"/bottlenecks/rejuv-agenda-late-effects-are-not-counted/"},{"id":"b-survivorship","kind":"bottleneck","name":"Survivorship and late effects are neglected","route":"/bottlenecks/b-survivorship/"},{"id":"b-toxicity-qol","kind":"bottleneck","name":"Toxicity and quality of life are undervalued","route":"/bottlenecks/b-toxicity-qol/"}],"paper":[{"id":"paper-di-maio-j-clin-oncol","kind":"paper","name":"Symptomatic toxicities experienced during anticancer treatment: agreement between patient and physician reporting in three randomized trials","route":"/key-papers/paper-di-maio-j-clin-oncol/"}],"idea":[{"id":"idea-rejuv-second-cancer-latency-cohort-for-new-drugs","kind":"idea","name":"Enrol every new systemic therapy into a registry linkage that will still report in thirty years","route":"/ideas/idea-rejuv-second-cancer-latency-cohort-for-new-drugs/"}],"roadmap":[{"id":"survivorship-roadmap","kind":"roadmap","name":"Supportive care and survivorship roadmap: making treatment bearable → proving it extends life → caring for tens of millions afterwards","route":"/roadmaps/survivorship-roadmap/"}]}}