Childhood cancer survivor registry: India’s first national registry tracking childhood cancer survivors has reported strong long-term outcomes, with a five-year overall survival rate of 94.5% and an event-free survival rate of 89.9%, according to a study published in The Lancet Regional Health – Southeast Asia.
The registry, known as the Indian Childhood Cancer Survivorship (C2S) study, was launched in 2016 and is among the first survivor registries from a resource-limited setting, researchers said. The study includes data from 20 centres across the country and brings together public and private institutions across India’s regions.
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Researchers from institutions including AIIMS and the Rajiv Gandhi Cancer Institute and Research Centre in New Delhi analysed 5,419 children who were diagnosed with cancer before age 18 and were in remission after completing treatment. Survival outcomes were available for 5,140 participants.
Acute leukaemia was the most common diagnosis, accounting for 40.9% of cases. Most children received chemotherapy (94.7%), while 30% underwent surgery and 26.3% received radiotherapy.
Among survivors followed for at least two years after treatment (2,266 children), outcomes were even higher: five-year overall survival was 98.2% and event-free survival was 95.7%.
The authors said the cohort could serve as a model for survivorship tracking in other low-resource settings and could support policy-relevant research on long-term outcomes. They also highlighted the need to better understand “late effects” of childhood cancer treatment, health problems that may appear months or years after therapy ends.
Past estimates suggest one-third to one-half of childhood cancer survivors develop a long-term or late effect, with a substantial portion potentially serious or life-threatening. However, researchers noted that data from low- and middle-income countries remain limited, and the registry is intended to help close that evidence gap in the Indian context.