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The Indian Express

⇱ India’s first childhood cancer registry shows high survival


India’s first nationwide registry tracking childhood cancer survivors has reported encouraging survival outcomes, while cautioning that many children face health problems months or even years after completing treatment.

The findings, published in The Lancet Regional Health Southeast Asia in February 2026, are based on data from 5,419 survivors enrolled across 20 centres under the Indian Childhood Cancer Survivorship (C2S) cohort. Survival data were available for 5,140 children. Measured from the time of initial diagnosis, five-year overall survival stood at 94.5 per cent — meaning nearly 95 out of every 100 children were alive five years later.

The study, titled Long-term outcomes of the Indian childhood cancer survivorship C2S cohort: a multicentre study (2016–2024), was launched to understand how children fare after completing cancer treatment. It was developed by the Indian National Pediatric Oncology Group in 2016 and is now overseen by the Indian Pediatric Hematology Oncology Group. The project is coordinated by AIIMS New Delhi, which manages data collection and quality checks.

Children were enrolled only after completing treatment and being declared in remission. Those who relapsed, abandoned treatment, or died early were not included. Nearly half of the children were between two and eight years old at diagnosis. Most were boys, and many came from families with modest income and educational backgrounds, particularly those treated in government hospitals.

Doctors monitored survivors every three months for the first two years and every six months thereafter, either in person or by phone. Follow-up assessments included growth, puberty, schooling, and symptoms such as fatigue, cough or emotional distress. Family socio-economic status was also recorded.

Acute leukaemia was the most common cancer, accounting for 40.9 per cent of cases, followed by Hodgkin lymphoma at 12.9 per cent, bone tumours at 8.4 per cent, and retinoblastoma at 7.4 per cent. Almost all children received chemotherapy, about one-third underwent surgery, and one-quarter received radiotherapy.

The highest enrolment came from AIIMS New Delhi, Rajiv Gandhi Cancer Institute, and Kidwai Memorial Institute of Oncology. In Mumbai, Tata Memorial Hospital and Municipal Medical College and Hospital Sion were among the key contributors.

Event-free survival — indicating children remained free from relapse or serious complications — was 89.9 per cent at five years. Among 2,266 survivors followed for at least two years after treatment, overall survival rose to 98.2 per cent and event-free survival to 95.7 per cent.

“This cohort will serve as a denominator for future research on late effects, support the development of survivorship guidelines, and inform policy planning in India and comparable LMIC settings,” the doctors wrote. “Recognition of the importance of appropriate multidisciplinary and cross-specialty care is increasing. This cohort provides evidence to enable accurate characterisation of late effects and long-term morbidities in this population.”

However, the study also highlights the hidden burden of survivorship. International research shows that one-third to one-half of childhood cancer survivors experience long-term complications, some of which can be life-threatening. These may include heart problems, hormonal disorders, learning difficulties or emotional challenges that emerge long after treatment ends.

The C2S study is planned in two phases. The first phase, focused on building the registry, is complete. The second phase will examine specific late effects, including cardiac, endocrine, neurocognitive and psychosocial complications. Researchers aim to develop India-specific survivorship guidelines tailored to local realities such as treatment patterns and socio-economic barriers.

Doctors noted that loss to follow up remains a major concern, especially among adolescents and families from lower income backgrounds. Distance from tertiary hospitals and financial constraints often affect regular check ups. To address this, researchers have recommended stronger counselling, better awareness and tele survivorship models that allow remote follow up through phone or digital platforms.