# Childhood Cancer Survivor Study (CCSS)

Source: https://onco.cc/trials/ccss/  
OnCo record `ccss` (Trial). Data CC BY-NC 4.0, attribute "Data from OnCo (onco.cc)"; commercial use needs a licence.

## TL;DR

The largest study of what happens to children after cancer is cured. Following tens of thousands of survivors for decades, it showed that heart damage, second cancers and other late effects were common after older treatments, and that gentler modern protocols have already halved late deaths.

## Summary

NCI-funded cohort coordinated at St. Jude since 1994, covering leukaemia, lymphoma, CNS tumours, Wilms tumour, neuroblastoma, soft-tissue sarcoma and bone tumours; the expansion cohort (diagnoses 1987-1999) brought the total to more than 35,000 survivors and around 5,000 siblings. Its papers quantified the late-effects burden: by age 50 most survivors have a severe or life-threatening chronic condition, driven by anthracyclines, chest radiotherapy, cranial radiotherapy and alkylators. Armstrong et al. (NEJM 2016) analysed 34,033 survivors: of 3,958 deaths, 1,618 (41%) were health-related (746 subsequent neoplasms, 241 cardiac, 137 pulmonary). Fifteen-year all-cause mortality fell from 12.4% for diagnoses in the early 1970s to 6.0% in the 1990s, and health-related mortality from 3.5% to 2.1%, attributable to reduced cranial radiotherapy in ALL, reduced abdominal radiotherapy in Wilms tumour and less anthracycline exposure. CCSS data underpin the COG Long-Term Follow-Up Guidelines, the dexrazoxane and cardiac-screening evidence, and the case for treatment de-escalation in trials such as ACNS0331 and AREN0533. Public data are available through the CCSS website, and the St. Jude Lifetime Cohort (SJLIFE) adds clinically assessed outcomes.

## Fields

- Kind: Trial
- Status: active
- Last checked: 2026-09-10
- Tags: nci-coverage; paediatric; survivorship
- Registry id: NCT01120353
- Phase: observational
- Setting: Retrospective cohort with prospective follow-up of five-year survivors of childhood cancer diagnosed 1970-1999 at 31 North American centres, with sibling controls
- Sponsor: St. Jude Children's Research Hospital / National Cancer Institute
- Enrolled: 50000
- Result: 15-year all-cause mortality among five-year survivors fell from 12.4% (early 1970s) to 6.0% (1990s) as treatment exposures were reduced.
- Outcomes: 15-year cumulative all-cause mortality by treatment era: Diagnosed early 1970s 12.4% vs Diagnosed 1990s 6%; 15-year health-related mortality by treatment era: Diagnosed early 1970s 3.5% vs Diagnosed 1990s 2.1%
- Replication: The British Childhood Cancer Survivor Study, the Nordic ALiCCS cohort and the Dutch DCOG-LATER cohort report the same late-effects pattern and falling late mortality.

## Sources

- ClinicalTrials.gov NCT01120353: https://clinicaltrials.gov/study/NCT01120353
- Armstrong et al., NEJM 2016: https://doi.org/10.1056/NEJMoa1510795
- CCSS: https://ccss.stjude.org
- COG Long-Term Follow-Up Guidelines: http://www.survivorshipguidelines.org

## Connected records

- collections: [British Childhood Cancer Survivor Study (BCCSS)](https://onco.cc/collections/bccss/), [PanCareSurFup and the European survivor cohorts](https://onco.cc/collections/pancaresurfup/), [St Jude Lifetime Cohort Study (SJLIFE)](https://onco.cc/collections/sjlife/)
- cancers: [Acute lymphoblastic leukaemia](https://onco.cc/cancers/all-leukemia/), [Adolescent and young adult cancers (ages 15 to 39)](https://onco.cc/cancers/aya-cancers/), [Ewing sarcoma](https://onco.cc/cancers/ewing-sarcoma/), [Hodgkin lymphoma](https://onco.cc/cancers/hodgkin-lymphoma/), [Medulloblastoma](https://onco.cc/cancers/medulloblastoma/), [Neuroblastoma (paediatric)](https://onco.cc/cancers/neuroblastoma/), [Osteosarcoma](https://onco.cc/cancers/osteosarcoma/), [Rhabdomyosarcoma](https://onco.cc/cancers/rhabdomyosarcoma/), [Wilms tumour (nephroblastoma)](https://onco.cc/cancers/wilms-tumor/)
- fronts: [Recovery & Rejuvenation](https://onco.cc/fronts/rejuvenation/), [Supportive Care & Survivorship](https://onco.cc/fronts/supportive-care/)
- technologies: [Breast cancer after chest radiotherapy in childhood, and the screening that follows](https://onco.cc/technologies/rejuv-paed-breast-after-chest-radiotherapy/), [Cardio-oncology](https://onco.cc/technologies/cardio-oncology/), [Education, work and the years that were interrupted](https://onco.cc/technologies/rejuv-ayac-education-and-work/), [Fertility in boys and young men treated for cancer, including testicular tissue banking](https://onco.cc/technologies/rejuv-paed-fertility-male/), [Growth and final height after treatment in childhood, and growth hormone](https://onco.cc/technologies/rejuv-paed-growth-and-height/), [How much illness childhood cancer survivors carry, and at what age](https://onco.cc/technologies/rejuv-paed-chronic-disease-burden/), [Late deaths after childhood cancer, what causes them, and the proof that gentler treatment worked](https://onco.cc/technologies/rejuv-paed-late-mortality/), [Memory, attention and learning after treatment of a childhood cancer](https://onco.cc/technologies/rejuv-paed-neurocognitive/), [Second cancers after childhood cancer: the risk by treatment, and why it is falling](https://onco.cc/technologies/rejuv-paed-second-cancers/), [Strain echocardiography (global longitudinal strain)](https://onco.cc/technologies/strain-echocardiography-gls/), [Survivorship care and late-effects surveillance](https://onco.cc/technologies/survivorship-care-plan/), [Teeth, jaws and facial growth after treatment in childhood](https://onco.cc/technologies/rejuv-paed-teeth-and-face/), [The Children's Oncology Group Long-Term Follow-Up Guidelines](https://onco.cc/technologies/rejuv-paed-cog-ltfu-guidelines/), [The handover from children's to adult services, where follow-up falls away](https://onco.cc/technologies/rejuv-paed-transition-to-adult-care/), [The heart after anthracyclines and chest radiotherapy in childhood](https://onco.cc/technologies/rejuv-paed-heart/), [Troponin and natriuretic peptide monitoring during cancer treatment](https://onco.cc/technologies/cardiac-biomarker-monitoring/)
- institutions: [National Cancer Institute (NIH)](https://onco.cc/institutions/nci/), [St. Jude Children's Research Hospital](https://onco.cc/institutions/st-jude/)
- terms: [Cardiotoxicity (LVEF decline, cardiomyopathy)](https://onco.cc/terms/cardiotoxicity/), [Cure is not enough: when late effects stopped being an afterthought](https://onco.cc/terms/rejuv-history-cure-is-not-enough/), [Late effects and survivorship toxicity](https://onco.cc/terms/late-effects/)
- trials: [COG ACNS0331](https://onco.cc/trials/acns0331/), [COG AREN0533](https://onco.cc/trials/aren0533/)
- 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/)
- key papers: [Reduction in Late Mortality among 5-Year Survivors of Childhood Cancer](https://onco.cc/key-papers/paper-armstrong-n-engl-j-med/)
- roadmaps: [Paediatric oncology roadmap: cooperative-group cures → engineered immunity → drugs developed for children first](https://onco.cc/roadmaps/paediatric-oncology-roadmap/), [Recovery and rejuvenation roadmap: cure is not enough → survivorship gets a name → the cohorts that measured the cost → exercise proven as treatment → biological ageing measured and sold → repair, if anyone funds it](https://onco.cc/roadmaps/rejuvenation-roadmap/), [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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JSON: https://onco.cc/api/v1/entities/ccss.json