Childhood Cancer Survivor Study (CCSS)
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.
Overview
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.
- 12.4 vs 6 out of 100 alive at 15 years with Diagnosed early 1970s compared with Diagnosed 1990s; 6.4 more per 100.
- Roughly one extra person helped for every 16 treated. That is a rough figure taken from the two percentages, not a guarantee for any one person.
- 3.5 vs 2.1 out of 100 alive at 15 years with Diagnosed early 1970s compared with Diagnosed 1990s; 1.4 more per 100.
- Roughly one extra person helped for every 71 treated. That is a rough figure taken from the two percentages, not a guarantee for any one person.
- The p-value (<0.001 for trend) says a difference this large would rarely happen by chance; it does not say how large or how useful the difference is.
- Overall survival counts deaths from any cause, so it is the most direct measure of whether a treatment helps people live longer.
- These results apply to the people the trial enrolled: Retrospective cohort with prospective follow-up of five-year survivors of childhood cancer diagnosed 1970-1999 at 31 North American centres, with sibling controls. People in a different situation may not see the same effect.
Numbers are from the trial as recorded here; see the source links in the table below. This is orientation, not medical advice: ask your team how closely the trial population matches you.
50,000 participants enrolled.
| Endpoint | Arm | n | Value | HR (95% CI) | p | Source |
|---|---|---|---|---|---|---|
| 15-year cumulative all-cause mortality by treatment eraprimary | Diagnosed early 1970s | — | 12.4% | — | <0.001 for trend | link |
| Diagnosed 1990s | — | 6% | ||||
| 15-year health-related mortality by treatment era | Diagnosed early 1970s | — | 3.5% | — | <0.001 for trend | link |
| Diagnosed 1990s | — | 2.1% |
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