From Our Correspondent
New Delhi: The Union Ministry of Health and Family Welfare is collaborating with the Indian Council of Medical Research (ICMR) to establish a dedicated nationwide childhood cancer registry. The initiative aims to improve early detection, ensure comprehensive reporting, and potentially make childhood cancer a notifiable disease, addressing significant gaps in diagnosis and survival rates.
Senior health officials announced the plans during a recent national workshop organized by the Indian Childhood Cancer Initiative (ICCI). Deputy Director General of the Directorate General of Health Services (DGHS), Leimapokpam Swasticharan, emphasized that early detection is a top priority. “Setting up a registry for childhood cancer and declaring it a notifiable disease is under consideration. We are working with ICMR on this. The aim is not to miss any patient,” he stated.
Alarming Burden of Childhood Cancer in India
India faces a substantial burden of pediatric cancers, with an estimated 75,000 new cases reported annually among children. Childhood cancers (ages 0-14) account for approximately 4% of all cancer cases in the country, according to reports from the National Cancer Registry Programme (NCRP) under ICMR.
Key statistics include:
Global context: Worldwide, around 400,000 children and adolescents (0-19 years) are diagnosed with cancer each year. Survival rates exceed 80% in high-income countries but remain below 30% in many low- and middle-income countries (LMICs) like India due to delayed diagnosis, limited access to care, treatment abandonment, and other barriers.
Survival in India: Current survival rates hover below 60%, significantly lower than global benchmarks for treatable cancers such as leukemia, lymphomas, and certain solid tumors.
Incidence patterns: Common cancers in Indian children include leukemias (especially Acute Lymphoblastic Leukemia), lymphomas, brain and central nervous system tumors, and retinoblastoma. Population-based registries show varying incidence; for example, a dedicated registry in Greater Chennai recorded an incidence rate of 136 per million children during 2022–2023.
Challenges: Many cases go undiagnosed or present at advanced stages. Experts estimate a high rate of missed cases, particularly in rural and underserved areas. Hospital-based data from across India highlight the need for better tracking from diagnosis through treatment and follow-up.
The proposed registry would build on existing NCRP efforts (population-based and hospital-based registries) by creating a focused system for children. This would enable better epidemiological tracking, geographic mapping of high-burden areas, outcome monitoring, and data-driven policy making.
Broader Efforts and International Alignment
The initiative aligns with the WHO Global Initiative for Childhood Cancer, which targets at least 60% survival rates by 2030. India has adopted frameworks like the CURE-ALL strategy and integrates childhood cancer care under schemes such as Ayushman Bharat Pradhan Mantri Jan Arogya Yojana (PM-JAY), which provides financial coverage for treatment.
Officials are also exploring district-level care models, expanded screening, and stronger referral networks to reduce delays.
Health advocates welcome the move, noting that a robust registry could significantly improve survival by ensuring no child “falls through the cracks.” With timely intervention, many childhood cancers are highly curable.
As India works toward universal health coverage and stronger non-communicable disease control, this registry represents a critical step in prioritizing the youngest and most vulnerable patients. Further details on implementation, timelines, and funding are expected in the coming months.
Sources: ICMR-NCDIR reports, WHO, and recent health ministry statements.