Birth defects reporting and surveillance in India: a narrative review

Area of Science:

• Public Health
• Epidemiology
• Medical Surveillance

Background:

• Mortality from birth defects is increasing in low and middle-income countries, necessitating robust surveillance systems.
• Effective strategies to address congenital disorders in India require comprehensive data.
• Existing literature on birth defect surveillance in India is limited.

Purpose of the Study:

• To document existing birth defect surveillance and reporting systems in India.
• To analyze the current status, structures, and reporting formats of these systems.
• To identify potential improvements for a sustainable sentinel surveillance system.

Main Methods:

• A narrative review employing empirical analysis of retrieved literature and website searches.
• Identification and examination of two primary surveillance systems: SEAR-NBBD and RBSK.
• Assessment of system structures, reporting formats, and data availability.

Main Results:

• Two main surveillance systems identified: WHO SEAR-NBBD (passive surveillance, non-representative sample) and Rashtriya Bal Swasthya Karyakram (RBSK) (child screening and early intervention).
• SEAR-NBBD covers eight congenital anomalies with quality control; RBSK covers nine birth defects across different age groups.
• Data from both systems are not publicly accessible, limiting broader epidemiological analysis.

Conclusions:

• Both SEAR-NBBD and RBSK have strengths and weaknesses that can inform the development of a sustainable sentinel surveillance system for birth defects in India.
• Publicly accessible data is crucial for effective monitoring and intervention planning.
• Further development is needed to create a comprehensive and sustainable national birth defect surveillance program.