Establishing the First Dedicated Population-Based Childhood Cancer Registry (PBCCR) And 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 a dedicated population-based childhood cancer registry (PBCCR). A PBCCR tries to capture data on all newly diagnosed cancer cases in a geographical region from multiple and heterogeneous sources, including hospitals, community, and government vital statistics records. A PBCCR provides information on cancer incidence and patterns in the population being served. 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 capture detailed information on pediatric cancers; therefore, their data is inadequate to understand the epidemiology and outcomes of pediatric cancers. We, therefore, plan to establish the first dedicated pediatric PBCCR in Chennai, India. If successful, the Chennai PBCCR can serve as an example for establishing similar registries in India and other LMICs. Childhood cancers are rare, and most children with cancer are treated at few tertiary cancer hospitals in a region or country. Hospital-based childhood cancer registries (HBCCRs) collect more detailed data on socio-demographic features, staging, and treatment than general cancer registries. Therefore, HBCCRs are important contributors to the development of PBCCR. The success of a PBCCR is dependent on the quality of the data obtained from the HBCCRs. The project aims to strengthen the existing HBCCRs in Chennai metropolitan region by forming a network and ensuring that data recorded is comparable, valid, timely, and complete. We would also identify the enablers and barriers for establishing and running a PBCCR and network of HBCCRs through an implementation science perspective. The observations in the implementation study will help understand the challenges in establishing a PBCCR and will serve as a guide for establishing similar registries in India and other countries. The PBCCR will be developed using best practice, disseminated notably through the Targeting Childhood Cancer through the Global Initiative for Cancer Registry Development (ChildGICR). The PBCCR will be established at the Cancer Institute (W.I.A), Chennai, India. Cancer Institute is a 67-year-old, 500 bed, non-profit, charitable, teaching, and leading cancer center in India. The hospital-based and population-based registry was first established at the Institute in 1954 and 1981, respectively. The Tamilnadu state cancer registry project was initiated at the Institute in 2016. Therefore, Cancer Institute(W.I.A) has the necessary experience and resources to spearhead the first dedicated PBCCR in India. The project has received ethics committee approval.