ESTABLISHING THE FIRST DEDICATED POPULATION-BASED CHILDHOOD CANCER REGISTRY (PBCCR) AND NETWORK OF HOSPITAL-BASED CHILDHOOD CANCER REGISTRIES (HBCCRs) IN INDIA
To map all the potential data sources that provide patient data to the Chennai PBCCR and evaluate the completeness of data regarding patient identity, disease information, and follow-up.
All children with cancer or non-malignant brain tumors less than or equal to 19 years of age and registered in the designated network hospital for diagnosis or treatment will be included in the respective HBCCR.
● Analysis of the current registration system
● Identify the factors or challenges that impede the successful implementation of a
PBCCR and network of HBCCRs.
● Propose solutions for the above factors or challenges
● Formulate an implementation standard operating procedure (SOP) to initiate new
PBCCR and HBCCR and troubleshooting problems.
A first step towards improving survival in children with cancer in LMICs is to capture accurate data on cancer incidence, prognostic factors, and outcomes. This objective is best achieved through a PBCCR and strengthening existing HBCCRs. The Chennai PBCCR and network of HBCCRs will be the first-of-its-kind initiative in India to address the lacuna in pediatric cancer registration and surveillance statistics.