Building Patient Registry

Background

Data on long-term outcomes and late effects are limited in India. The INPHOG survivorship and late effects subcommittee in 2016 launched the first study on survivorship ‘Childhood Cancer Survivorship (C2S) Study’ InPOG-LE-16-01, was planned in two phases with distinct objectives. Phase one: To establish a multi-center registry and form the Indian Childhood Cancer Survivorship Cohort for children completing treatment for childhood cancer. Phase two would focus on in-depth studies that will be directed at providing evidence on the strength and direction of the association of late effects with exposures on the Indian C2Scohort and would attempt to generate guidelines for follow-up of childhood cancer survivors in India. At the end of the study, we expected to have the number and proportion of survivors who are at least 2 years off therapy and in continued remission.

Methodology

  • Study Design: Prospective multicentric observational cohort study.
  • Duration: This study was initiated in 2016 and planned recruitment initially for five years but has received extension till the year 2029.
  • Who will be included in the study: Children (≤18 years of age at diagnosis) having completed treatment for cancer and in complete remission.
  • Data: The study provides a detailed description of the cohort characteristics, treatment exposures (chemotherapy, radiotherapy, surgery), and systematic follow-up. The outcomes (survival, relapse, lost to follow up) was available for the cohort via the registry.
  • Follow up: Patients were followed every 3 months for the first 2 years and every 6 months thereafter, using physical or telephone contact to ascertain vital status. The database was updated at least once in six months.

Findings

As of December 2024, the study includes data from 20 centres across India with 5419 survivors being enrolled, with survival data available for 5140. Common diagnoses were acute leukaemia (40.9% with 34.4% being acute lymphoblastic leukaemia), Hodgkin lymphoma (12.9%), retinoblastoma (7.4%), and bone tumors (8.4%). Common therapeutic exposures included chemotherapy (94.7%), surgery (30.3%), and radiotherapy (26.3%). The 5-year overall survival (OS) and event-free survival (EFS) rates for the entire cohort were 94.5% (95% CI: 93.7–95.3) and 89.9% (95% CI: 88.8–91.0), respectively.

Conclusion

The cohort would form a denominator for the future multicentre research on childhood cancer survivorship in the country, as differences in exposures warrant local adaptations of the international guidelines in the regional context, with due consideration to the regional evidence.
doi.org/10.1016/j.lansea.2026.100727

Background

The majority of children with cancer are in resource-limited countries, yet less than 10% of the global data comes from these regions. The absence of reliable data on childhood cancer worldwide has far-reaching consequences and this has been addressed by the establishment of the first dedicated population-based childhood cancer registry in Chennai, India in October 2022.

Population Covered

The registry covers the entire Greater Chennai Corporation, comprising 15 zones and 200 divisions. The estimated paediatric population (0–19 years) in 2023 was 1.75 million.

Findings

In 2023, a total of 210 new childhood cancer cases were identified among residents of Greater Chennai. Of these, 156 cases (74%) were registered directly by the Chennai PBCCR with High resolution data abstraction, while the remaining 54 cases (26%) were obtained from routine data sources of the Tamil Nadu Cancer Registry Project (TNCRP) to ensure completeness. The most common childhood cancers in Chennai in 2023, based on age-standardized incidence rates (per million population), were: Leukemias – 49.0, Lymphomas and related neoplasms – 18.2, Malignant bone tumors – 10.8, Central nervous system tumors – 9.1, Germ cell tumors – 6.3. Majority of treated patients received chemotherapy with approximately 73% were treated using a defined therapeutic protocol. The male to female ratio was 1.26:1. The Crude Incidence rate (CIR) and Age- Standardized Rate (ASR) was 119.7 and 119.4 per million population respectively. One in every 394 boys and One in every 465 girls has cancer in the age group 0 to 19 years.

Conclusion

This effort is now being expanded to the entire state of Tamil Nadu which will provide us coverage of approximately 5% of the Indian population. This data generated will support policy level decision making and will monitor the impact of local interventions. (Ref:Radhakrishnan V, Selvam P, Balaji TK, Swaminathan R, on behalf of the Chennai Population-Based Childhood Cancer Registry (PBCCR) Study Group. High-resolution Data and Pediatric Cancer Incidence in Greater Chennai Corporation (GCC), Tamil Nadu, India: 2023. Cancer Institute (W.I.A) – Bagchi TNPBCCR Project Chennai, 2026.)