# A lifelong late-effects registry linked to every treatment for adult survivors

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

## TL;DR

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.

## Fields

- Kind: Idea
- Last checked: 2026-09-08
- 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.
- Proposed 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

## Sources

- 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): https://doi.org/10.1200/JCO.2014.57.9334

## Connected records

- institutions: [Karolinska University Hospital](https://onco.cc/institutions/karolinska/), [National Cancer Institute (NIH)](https://onco.cc/institutions/nci/)
- bottlenecks: [Registries count diagnoses and deaths, and not what treatment left behind](https://onco.cc/bottlenecks/rejuv-agenda-late-effects-are-not-counted/), [Survivorship and late effects are neglected](https://onco.cc/bottlenecks/b-survivorship/), [Toxicity and quality of life are undervalued](https://onco.cc/bottlenecks/b-toxicity-qol/)
- key papers: [Symptomatic toxicities experienced during anticancer treatment: agreement between patient and physician reporting in three randomized trials](https://onco.cc/key-papers/paper-di-maio-j-clin-oncol/)
- ideas: [Enrol every new systemic therapy into a registry linkage that will still report in thirty years](https://onco.cc/ideas/idea-rejuv-second-cancer-latency-cohort-for-new-drugs/)
- roadmaps: [Supportive care and survivorship roadmap: making treatment bearable → proving it extends life → caring for tens of millions afterwards](https://onco.cc/roadmaps/survivorship-roadmap/)

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