National Stroke Registry Programme in India for Surveillance and Research: Design and Methodology

Abstract

The burden of stroke is increasing, and India lacks comparable long-term data on stroke incidence and mortality. Disease surveillance using a registry model can provide long-term data on stroke for linking with public health interventions in stroke prevention, treatment, and rehabilitation. The objectives of the National Stroke Registry Programme (NSRP), India, are to generate reliable data on the incidence of first-ever stroke events in defined populations through a population-based stroke registry (PBSR) and to describe the patterns of care and outcomes of patients with stroke in different treatment settings through a hospital-based stroke registry (HBSR). Continuous systematic collection on a standardized format of diagnostic, treatment, and outcome information on stroke events in persons of defined population (PBSR) and those who attend hospitals (HBSR) is conducted through active data abstraction from review of records from all health facilities and imaging centres that cater to stroke patients. Data are ICD coded, verified, and completed by obtaining survival status of registered patients. IT tools are used for data collection,management and analysis. The NSRP shall establish a standardized stroke surveillance system that would reliably measure stroke incidence, subtypes, treatment patterns, complications, disability, case fatality, and survival. This evidence shall inform health planning of stroke interventions and control activities. It would facilitate improvement in stroke services to improve quality of care and outcomes of stroke. A thrust for research on stroke would be encouraged based on evidence-based hypothesis generation.