Establishing the INPHOG Network of Hospital-Based Childhood Cancer Registries (HBCCRs) in India.

An important component of improving the survival of children with cancer in low and middle-income countries (LMICs) and achieving the targets set by the World Health Organization (WHO), Global Initiative for Childhood Cancer (GICC), is to capture the incidence and outcome of children with cancer. This objective can be best served through dedicated hospital-based childhood cancer registries (HBCCRs) and population-based childhood cancer registries (PBCCRs). An HBCCR captures data on all pediatric cancers presenting to a hospital irrespective of the geographic location of the patient. A PBCCR captures data on all newly diagnosed cancer cases in a defined geographical region from multiple and heterogeneous sources, including hospitals, community, and government vital statistics records. To date, there is a lack of high-resolution data to perform an in-depth analysis of variation in childhood cancer incidence and survival in India. General cancer registries do not specialize in capture of detailed information on diagnosis and follow-up of pediatric cancers; therefore, their data is inadequate to understand the epidemiology and outcomes of pediatric cancers. We, therefore, plan to establish a dedicated network of HBCCRs in India. The network will include centers that are part of the Indian Pediatric Hematology Oncology Group (INPHOG). If successful, the INPHOG HBCCR can serve as an example for establishing similar registries in India and other LMICs and provide high-resolution data to population-based cancer registeries.

Data for the registry will be collected in the standardized case record form (CRF). This CRF is being used for data collection at the Cancer Institute (WIA) HBCCR and the Chennai PBCCR. The REDcap database will be hosted in a server that will be kept at the Madras Metropolitan Tumor Registry (MMTR) at Cancer Institute, Chennai.   Data analysis and interpretation will be according to the IARC guidelines for cancer registries. Demographic details, social determinants of health, the latest Toronto pediatric staging system and Lyon non-stage prognosticators, treatment details (surgery, radiotherapy, and chemotherapy), and longitudinal outcomes data including recurrence and second cancers will be collected to enhance the core infrastructure of registry data on pediatric patients.