Context & Purpose
A key challenge in strengthening India’s pediatric cancer data ecosystem is the limited number of centres contributing to the Hospital-Based Childhood Cancer Registry (HBCCR). Many institutions face constraints such as a lack of dedicated staff, limited awareness of registry processes, and variable data quality.
The purpose of this goal is to expand participation across more INPHOG and non-INPHOG centres, ensure timely and accurate data reporting, and build sustainable capacity for pediatric cancer registration through continuous mentoring and quality monitoring.
Status
To address this, ICCI with INPHOG have deployed five Clinical Research Coordinators (CRCs) across selected centres to support data entry and management for HBCCR/PBCCR, covering around 8–10 institutions.
Conducted the Pediatric Cancer Registry Data Meeting and CRC Workshop (January 31–February 1, 2025) in Chennai, attended by over 150 delegates, including 18 CRCs and 8 faculty members. (Attached)
Sessions covered topics such as registry data entry, REDCap database training, data quality improvement, and ethics in data handling.
The meeting also featured the release of HBCCR and PBCCR reports and the launch of the Tamil Nadu Population-Based and INPHOG Hospital-Based Registries, inaugurated by the Hon’ble Health Minister of Tamil Nadu.
Next Steps
Expand CRC coverage to additional centres through new funding opportunities to ensure wider registry participation.