A lifelong late-effects registry linked to every treatment for adult survivors
Children treated for cancer are followed for decades in a study that has changed how they are treated. Adults have nothing similar. Build it.
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.
- Toxicity and quality of life are undervalued · Trials measure how long people live, not how they live. Side-effects are under-reported and under-treated.
- Survivorship and late effects are neglected · Tens of millions of people live after cancer with heart damage, infertility, second cancers and fear, and few services.
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not linked directly; found by shared links- IdeaVocational rehabilitation integrated into cancer care so survivors can return to work
Shares Survivorship and late effects are neglected, Toxicity and quality of life are undervalued.
- IdeaMeasure and treat chemo brain with objective digital cognitive testing
Shares Survivorship and late effects are neglected, Toxicity and quality of life are undervalued.
- IdeaProspective arm-volume surveillance to catch and reverse lymphoedema early
Shares Survivorship and late effects are neglected, Toxicity and quality of life are undervalued.
- IdeaTrials of structured cognitive rehabilitation for cancer-related cognitive impairment
Shares Survivorship and late effects are neglected, Toxicity and quality of life are undervalued.
- IdeaFertility preservation offered and funded by default before gonadotoxic treatment
Shares Survivorship and late effects are neglected, Toxicity and quality of life are undervalued.
- IdeaSexual health assessed and treated as a standard toxicity domain
Shares Survivorship and late effects are neglected, Toxicity and quality of life are undervalued.
- IdeaA risk-stratified cardio-oncology pathway for everyone receiving heart-toxic cancer therapy
Shares Survivorship and late effects are neglected, Toxicity and quality of life are undervalued.
- IdeaBiomarker-guided cardioprotection for everyone on cardiotoxic cancer therapy
Shares Survivorship and late effects are neglected, Toxicity and quality of life are undervalued.