National Stroke Registry Programme (NSRP)

The ICMR-National Centre for Disease Informatics and Research (NCDIR) has as its mandate to plan, facilitate and support programmes of surveillance (electronic or otherwise) of diseases like diabetes, CVD, and stroke. The National Stroke Registry is an ambitious programme with the objectives:

  1. To generate reliable data on the magnitude and incidence of stroke;
  2. To know the patterns of care in patients with stroke.

Both of the above are expected to generate researchable data bases and thereby lay a strong foundation for epidemiological, clinical and public health research in stroke in our country. This would be supplemented constantly and steadily by software modules that would greatly enhance the quality of research including multi-disciplinary and multi-institutional research.

The NSRP draws its expertise in planning, collecting, managing, analyzing health information from the successful implementation of the National Cancer Registry Programme by the ICMR-NCDIR.

The NSRP was launched in 2012 with creation of website "www.strokeregistryindia.org", inviting registrations from Neurologists, Radiologists practicing / reporting on neuro-radiology, Physicians treating stroke patients, and Public and Community Health Specialists to join the Stroke registry. This was commenced as an exploratory exercise to assess the response from various categories of medical personnel, for setting up population and hospital based stroke registries across the country. Sixty two institutions have registered with NCDIR for the Stroke Registry Programme as of January 2016. These institutions are major hospitals that diagnose and treat stroke cases and situated in a range of towns and cities.

Population Based Stroke Registry (PBSR)

There is a lack of reliable and comparable data on stroke incidence in population settings in India. Population based Stroke Registries are essential to understand the burden of stroke in populations, within country variation in stroke incidence, trends in occurrence of stroke, and monitoring the interventions to reduce stroke incidence.

The Population Based Stroke Registry (PBSR) has been launched with the objective to collect information on incidence of first ever stroke in defined populations of India. The PBSR will be initiated in one geographical area from the south, north, east, west and north east regions of India. Methodology will include the method of active case detection from multiple sources (hospitals, nursing homes, clinics, GPs, imaging centres, other centres, and death certificate verification for stroke) by a PBSR team housed in a Medical Institution identified as the PBSR centre. The PBSR Centre will collaborate with as many centres in a given area to record all incident cases of stroke using a Core Form.

Selection of PBSR Centres

The Department of Health Research Scheme on ‘Multi Disciplinary Research Units (MRUs) in medical colleges’ has been supporting government medical colleges with infrastructure and building capacity so as ‘To undertake research in non-communicable diseases’. Medical colleges that have registered with the NSRP of NCDIR and are MRUs have been selected as PBSRs.

Data Collation and Security

Data on stroke incident events will be recorded through a web-based electronic information system coordinated by the ICMR-National Centre for Disease Informatics and Research (NCDIR).

Hospital Based Stroke Registry (HBSR)

A HBSR to provide evidence based information on Patterns of Care in Patients with Stroke is also planned. Therefore, priority will be HBSRs at main sources (centres) that contribute to the PBSR of that area. A core form for HBSRs will be uploaded for discussion in due course.