Registrations are open for Stroke Registry. Please click here to register.

National Centre for Disease Informatics and Research

Scientific Advisory Committee

Chairperson Co-Chairperson

Dr. G K Rath
Professor and Head
Department of Radiation Oncology and Chief
Institute Rotary Cancer Hospital
All India Institute of Medical Sciences
Ansari Nagar, New Delhi – 110 029

Dr. B.K. Gairola
Director General National Information Centre
New Delhi - 110 003


Dr. P.C. Gupta
Healis- Sekhsaria Institute of Public Health, Navi Mumbai

Mr. P. Gangadharan
Consultant - Oncology Centre Amrita Institute of Medical Sciences and Research Centre, Kochi

Dr. A C Kataki
Dr. B.B. Borooah Cancer Institute, Guwahati

Prof. K. Ramachandran
(Ex Professor of Biostatistics All India Institute of Medical Science, New Delhi) Thondamuthur, Coimbatore

Dr. K.K. Talwar
Chairman Board of Governors Medical Copuncil of India(MCI), New Delhi

Dr. P.P. Bapsy
(Ex Director Kidwai Memorial Institute of Oncology, Bangalore) Chief Medical Oncologist Apollo Hospital, Bangalore

Dr Ashok Kumar Das
Additional DGHS & Director Professor of Medicine JIPMER Puducherry

Dr. S.V. Raghavan
Scientific Secretary to Principal Scientific Adviser to Government of India, New Delhi

Dr. Kameshwar Prasad
Professor of Neurology All-India Institute of Medical Sciences
New Delhi

Prof. U.C. Sarma
Vice Chancellor, Srimanta Sankaradeva University of Health Sciences
Guwahati, Assam

Dr. V. Mohan
President, Madras Diabetes Research Foundation

Dr. R.A. Badwe
Tata Memorial Hospital

Dr. D.M. Vasudevan
Amrita Medical College

Dr. A.K. Gupta
Professor and Head Department of Imaging Sciences & Interventional Radiology, Sree Chitra Tirunal Institute of Medical Sciences and Technology,Trivandrum

Ex-officio members
Directors ICMR Institutes / Centres

        Institute of Cytology and Preventive Oncology, Noida
        National Institute of Epidemiology, Chennai
        National Institute of Pathology, New Delhi
        National Institute of Medical Statistics, New Delhi
        Regional Medical Research Centre, Dibrugarh
Nominee – Secretary IT – Government of India, New Delhi
Nominee –Director General, National Information Centre, New Delhi
Nominee - Directorate General of Health Services, New Delhi
IT Secretary Karnataka, Bangalore
Health Secretary Karnataka, Bangalore
Project Director, Tamil Nadu Health Systems Project, Chennai

Statutory Member

Head, Division of Non-Communicable Diseases
ICMR, New Delhi

Member Secretary

Director / Director-in-Charge
National Centre for Disease Informatics and Research

Main Objectives

The main broad and overall objective of the centre is to sustain and develop a national research data-base on cancer, diabetes, CVD and stroke through recent advances in electronic information technology with a national collaborative network, so as to undertake aetiological, epidemiological, clinical and control research in these areas.

Broad Mission Statements

1. Plans, directs, develops, supports, coordinates and evaluates a national programme of cancer surveillance (electronic or otherwise) involving the collection and analysis of reliable data on magnitude and patterns of cancer so as to answer key questions about cancer incidence and mortality in different demographic and population settings

2. Plans, facilitates and supports programmes of surveillance (electronic or otherwise) of other diseases (diabetes, CVD, stroke) involving the collection and analysis of reliable data on magnitude and patterns so as to answer key questions about disease incidence and mortality in different demographic and population settings

3. Designs, undertakes and implements multi-registry/centric collaborative aetiologic research studies in-keeping with recent advances in epidemiological research.

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National Stroke Registry Programme

Research Area Panel on Stroke


Dr Kameshwar Prasad
Professor of Neurology & Head, Unit-I
Director, Clinical Epidemiology Unit
All India Institute of Medical Sciences, 704, 7th Floor, C N Centre,
Ansari Nagar, New Delhi – 110 029


Dr. Shyamal Kumar Das
Professor and Head
Department of Neurology
Burdwan Medical College, Burdwan


Dr. R. Kirthi Vasan
Professor of Neurology
Amrita Institute of Medical Sciences


Dr. B. Rajan
Chief Radiologist and Ultrasonologist
Mahaveer Jain Hospital


Dr. S.G. Srikanth
(Ex Professor of Radiology
National Institute of Mental Health and Neuro Sciences (NIMHANS), Bangalore)
Banashankari 2nd Stage, Bangalore

Main 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 control research in stroke in our country. This would be supplemented constantly and steadily by software modules (see below) that would greatly enhance the quality of research including multi-disciplinary and multi-institutional research. Depending on the response to this initiative scientific review meetings/workshops etc can be planned.


The plan by the National Centre for Disease Informatics and Research, Bangalore to set-up a stroke registry website and invite registrations is based on the recommendations of the Research Area Panel on Stroke meeting held on 26 April 2012. Accordingly on 11 December 2012 a website “” has been created. This is 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.


No specific method or module for setting up of Population Based Stroke Registry (PBSR) has been finalized as yet. However, the following points may be noted.

Evolvement of a Population Based Stroke Registry would be a multi disciplinary activity involving:

1)  Neurologists
2)  Radiologists practicing / reporting on neuro-radiology.
3)  Physicians treating stroke patients.
4)  Public and Community Health Specialists.
5)  Any other

Choice of Location

The web-site is giving a fair and equal chance to all of the above mentioned medical personnel to indicate their willingness in this exercise. The area(s) where Population Based Stroke Registries would be located will depend on the proportion of the above medical personnel participating within a given area. Therefore, it is highly desirable that an interested centre/department or individual in a given area/city ensures the registration of most if not ALL colleagues in that respective area/city. This precaution is to make certain of the cooperation of all concerned with diagnosing/treating/case finding of stroke in the specific location. That way a fair degree of completeness of coverage of stroke cases to provide valid incidence figures is guaranteed.

Whether the above personnel in the identified location would -

a)  directly contribute individually to the NCDIR through the website and fulfill their obligations or
b)  A given individual / department or an institution could take the lead with the cooperation of all the others (as is being done for Population Based Cancer Registries) in that respective area will be decided at a later stage.

Hospital Based Stroke Registry (HBSR)

A HBSR to provide evidence based information on Patterns of Care in Patients with Stroke is also planned. Since the mandate of the NCDIR is first to know the magnitude and the incidence of various types of stroke, a PBSR is the main concern. 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.

Data Collation and Transmission

The core form of the PBSR can be viewed/printed/downloaded from the web-site. The items comprising the identification and the Follow-up information have been time tested for several years under the National Cancer Registry Programme (NCRP). The other items have been discussed at the Research Area Panel Meeting and fine tuned. A procedure manual with guidelines to complete each of the items of information will be uploaded in due course on the web-site. A hard copy of the form needs to be completed for each of the patients diagnosed with stroke followed by electronic transmission. Those who register and are willing to completed the forms and transmit the data will be given a Log-in ID and Password and the core form will open on the web-site for data capture from about the first week of January 2013.

The form needs to be completed for all newly diagnosed patients with stroke diagnosed on or after 1 January 2013 and registered/diagnosed/treated in that respective institution/individual specialist. For purposes of calculation of incidence rates only patients who are resident of the registry area for at least one year is required. The terms of reference of the Public Health/Community Medicine specialists would be the ensure completion of the core form in stroke patients registered/diagnosed/treated in other smaller sources of registration in the registry area (that are not registered and/or not transmitting the data) and conduct verbal autopsy on all deaths registered through home visits.

Data Confidentiality and Ethical Issues

This will be along the lines followed for the NCRP also under the NCDIR. The NCDIR is the custodian of a given centre’s/individual’s data. No centre’s or individual’s data would be provided to another centre nor access provided. The NCDIR – ICMR has the obvious strength of clinically neutrality and will act accordingly. Patient identity would be immediately encrypted on data entry. Further details of the rules followed by NCRP can be provided.

Web-site and Software Development

The NCDIR has a small and young team of non-commercial software personnel who will evolve the software for data capture, verification, analysis and so on based on the requirements. It is up to the specialist neuro physicians to utilize this opportunity to evolve a standard uniform electronic stroke record across the country that is suitable for Indian conditions. A variety of outputs relevant to day to day patient care and management (as is already being done for Patterns of Cancer Patient Care and Survival) will be provided.


This will be decided after identification of the location of PBSRs and be need-based. Having stated that, NCDIR would urge interested centres to commence collation of data and transmission for all new cases registered/diagnosed/treated for stroke from 1 January 2013. About, 60 hospitals across the country are using our Hospital Based Cancer Registry Data Management Software since 2 years without funding mainly because the software is providing them the required information and analytical tables of their patients!

Comments/queries on the above are welcome

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Invitation Letter

All Neurologists
Radiologists practising Neuroradiology,
Public & Community Health Specialists,
Physicians treating Stroke Patients

Sub: Project on “Development of Stroke Registry in India”.

The National Cancer Registry Programme has been functioning as a long term activity of ICMR since 1982. The Coordinating Unit that was directing the entire programme has become a permanent Institute “National Centre for Disease Informatics and Research of ICMR. The NCRP has a network of Population and Hospital Based Cancer Registries across the country. The cancer registries have been collecting information on cancer (be it incidence, mortality, survival or patterns of patient care) in a scientific way. A number of reports and research publications (both national and international) have emerged as a consequence of this programme with impact towards cancer research, control and patient care.

The new centre has in its mandate to include besides cancer, Stroke, CVD and Diabetes for obtaining reliable data on magnitude and patterns so as to answer key questions about disease incidence and mortality in different demographic and population settings.

I am now writing to invite you for your active collaboration in the project on “Development of Stroke Registry in India”. The registration form and Population Based Stroke Registry Core Form are available on website We are also preparing a Hospital Based Stroke Registry (HBSR) Core Form which will be uploaded on website in due course. I request you to go to the website and complete the registration form online by 31 December 2012. As you would observe, the proposal envisages using electronic information technology in collecting information on stroke cases as and when they are reported. A key information that must be collected for all stroke cases reported, is the correct and complete residential address of the patient. At this point we are sending this proposal to all neurologists, neuroradiologists and physicians who are treating strokes. We would like to set up a Population Based Stroke Registry (PBSR) in areas where there is complete response or near complete response from all of the above categories of medical personnel (government & private, institutions & individuals). So I would request you to circulate this letter to all your colleagues in the area. Kindly note that this is an initial invitation letter. Based on the response from a particular city / town or district we will examine the feasibility of having a Population Based Stroke Registry in that place through visits, meetings, discussions with all concerned stakeholders. After that we will decide on which centres could be included and funding provided. We will also decide about having a HBSR especially in those centres that can actively contribute to the PBSR.

The project provides an extraordinary opportunity for health professionals to enter the Information Technology arena through participation in a National Programme and create a scientific base for research. As you would be aware, around the world medical researchers are benefiting from advances in computing and telecommunications. By partaking in this exercise your institution both at the individual and collective level would be giving yourself unprecedented research opportunities which was hitherto not possible. At the very least follow-up and survival studies could undertaken and at best basic and clinical research could find direct application. So, if you and your colleagues perceive that the project can be successfully carried out in your institution, kindly send your reply immediately.

We look forward to hear from you,
With warm regards,

Yours sincerely,

Dr.A. Nandakumar MD, MPH

Registration Form

Population Based Stroke Registry Core Form

Click here to download the PBSR Core Form


National Centre for Disease Informatics and Research (NCDIR) first Permanent Centre of ICMR at Bangalore...

Please call on NCDIR mobile numbers
(9449067643 (Administration),
9449033748 (Technical))
to contact us, since our landline numbers are not working.

Registrations are open for Stroke Registry.
Please click here to register.



National Centre for Disease Informatics and
(Indian Council of Medical Research)
II Floor of Nirmal Bhawan, ICMR Complex
Poojanhalli Road, Off NH-7
Adjacent to Trumpet Flyover of BIAL
Kannamangala Post Bangalore
562 110, India.