Welcome to National Centre for Disease Informatics and Research

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
  4. Evolves, coordinates and evaluates a national standardised programme on patterns of patient care and survival in different anatomical sites of cancer,
  5. Plans and facilitates programmes on patterns of patient care and survival in diabetes, CVD and stroke;
  6. Develops human resources in use of disease data base and informatics for research with focus on multi-disciplinary approach – field, clinic, laboratory using the tool of electronic information technology; and, in the process help stimulate cross training and inter and multi-disciplinary research.
  7. Will actively seek public-private partnership to fulfill any of the objectives and/or mission statements stated above and/or specific function statements outlined below.
                                                                                                                                                      

SPECIFIC FUNCTION STATEMENTS

  1. The centre will closely work with the Ministry of Health, Government of India and other Central/State Government or other agencies to provide or plan to provide baseline information and technically help in designing, monitoring and evaluating control programmes and activities.
  2. The centre would encourage and extend technical support to all Central/Regional/State medical institutions and medical colleges, non-governmental or private centres for constituting and establishing data collection (on cancer, CVD, Diabetes and Stroke) in their institutions along internationally acceptable and nationally adaptable formats and standards. Use of the internet and electronic information networking will be a regular feature.
  3. Studies in aetiology will receive special focus through disease specific registers like lymphoma-leukaemia registry, childhood cancer registry and bone tumour registry etc. incorporating recent classifications based on immuno-phenotyping etc. so as to enable conduct of multi-centric epidemiological studies.
  4. Conduct studies in populations with exceptional or changing incidence rates or unusual environmental exposures.
  5. The centre will plan, innovate and integrate recent advances in communications and electronic information technology to develop the emerging field of health/disease informatics and develop software modules for data capture, checking and analysis.
  6. The centre will have active interaction on scientific topics and where feasible collaborative projects with related ICMR permanent centres/institutes like Regional Medical Research Centre, Dibrugarh, Institute of Pathology, New Delhi, Institute of Cytology and Preventive Oncology, Noida, National Institute of Epidemiology, Chennai etc. In the same way it will also interact with local institutions in Bangalore like the Indian Institute of Science, Jawaharlal Nehru Centre for Advanced Scientific Research, etc.
  7. The centre will create a Directory of on-going research in India on cancer, diabetes, CVD and stroke.
                                                                                                                                                     

RESEARCH FOCUS

  • Primary focus: A nationwide data-base has already been established for cancer through the National Cancer Registry Programme and the Cancer Atlas Project. Therefore, the primary focus of research of the centre would be to undertake:
    a) epidemiological cancer research with laboratory component where relevant and important;
    b) patterns of care and survival studies on selected sites of cancer;
    c) cancer control research.
  • Secondary Focus: Facilitate and coordinate research activities by collaborating centres towards epidemiological and clinical studies in diabetes, CVD and stroke.
                                                                                                                                                

BASIS FOR SELECTION OF LOCATION.

  • The Coordinating Unit of the NCRP has been functioning at Bangalore since 1991. The basic infrastructure of staff, internet connectivity and computers and most importantly software programmes and modules have been developed. This has been developed in-house with support of hardware and software consultants. Further software development activity is underway so as to have user friendly state of the art modules that would meet the requirements listed above. Apart from the ease of consulting and/or hiring IT professionals/programmers there are several further reasons for having this centre in Bangalore. The Council has constructed a building for the units of ICMR located in Bangalore including the Coordinating Unit of NCRP. Lastly, like several major cities (including the metros) in India, it would promote the cause of medical research to have a permanent ICMR centre in Bangalore for several reasons. It has a number of medical institutions and several other scientific institutions. It would be important to have the presence of ICMR with a permanent centre with scope of future collaboration with many of these institutions. With the above information, Bangalore has been chosen as the location of this centre. 
                                                                                                                                               

REASONS AND JUSTIFICATION OF THE NEW CENTRE

India is experiencing a rapid health transition, with large and rising burden of chronic diseases, which are estimated to account for 53% of all deaths and 44% of disability adjusted life years lost in 2005 (Reddy et al, 2005). Therefore, there is an urgent need to develop a permanent centre that would provide a ready, valid, national data base be it for research, assessing clinical management or monitoring public health control measures.
With control of communicable diseases and changing life styles non-communicable diseases are becoming a major public health priority. Cancer, Diabetes, CVD and Stroke are all expected to rise both in numbers and incidence in the coming decades. There is a need for a sound national research data base – whether that research is towards causation, observing clinical outcome or designing and monitoring control programmes. The NCRP has laid a strong foundation over the years to build on for cancer. The same principles for establishing a cancer research data-base will be adopted for setting up research data-bases in these other diseases as well.
The broad areas of present activity of the Coordinating Unit of NCRP and the detailed reasons and justification are given elsewhere

The points for justification with NCRP as the practical model are summarised below.

  1. The present infrastructure at the Coordinating Unit in terms of number of staff and their status (which is temporary as opposed to permanency), space, equipment etc needs to be strengthened along the lines of other permanent ICMR centres for sustaining and expanding the activity on a long term basis. A permanent centre would ensure that data standards, quality and completeness of coverage in cancer registration are maintained and give direction towards cancer research and control activities. The overwhelming economic advantage of the cancer atlas approach in gathering information on cancer will be fully exploited without sacrificing the completeness and quality of information received through these means.
  2. The evolvement of the Coordinating Unit into a permanent ICMR centre will provide the infrastructure and strength to translate ideas into meaningful multi-centric collaborative studies with scientific impact. Consortial or collaborative studies have the economic advantage of pooling of resources and data-sets that increase the statistical power of the studies.
  3. A permanent centre that coordinates patterns of patient care activity (whether in cancer or diabetes or CVD or stroke) would have the strength of clinical neutrality, act as intelligence units and provide information services. It will also pave the way, for the practice of, evidence based medicine, help develop treatment protocols and possibly conduct clinical trials. Costs for treatment of cancer are extraordinarily high. Standardisation of treatment protocols for Indian conditions and patients with evaluation of costs and benefits measured through treatment outcome studies is a necessary step.
  4. Cancer surveillance and registration on a permanent setting would be required for designing, monitoring and evaluating cancer control programmes. The National Cancer Control Programme would need strong involvement of the proposed centre in research (cancer control research) and analysis and for need based planning of the programme. The immensity of the results in the report on ‘Development of an Atlas of Cancer in India’ provide several pointers towards the NCCP in general and the individual District Cancer Control Programmes in particular. This has also to be seen in the context of the inherent advantages of the application of Electronic Information Technology as a tool towards designing, monitoring and evaluation of cancer control programmes and activities. Without any doubt preventing any cancer from occurring or detecting it early is far more cost beneficial both in terms of cost of treatment and person years of life saved. The same analogy would apply for other non-communicable diseases.
  5. A permanent centre would help in providing in-house training in cancer/or NCD registration, epidemiology, the emerging field of heath informatics and help promote cross training for interdisciplinary and multi-disciplinary research. Use of trained staff is extremely important and is required to encourage and conduct research studies. Investment in human resources in this field is very important to carry on the various activities listed above at the proposed centre as well as in other collaborating centres across the country.
  6. All of the above needs to be achieved through rapid integration of recent advances in electronic information technology so as to achieve the maximum results in terms of aetiological research, assessing and evaluating patterns of patient care and in monitoring disease control. To advance the key development of disease informatics on a national scale a permanent ICMR centre is necessary to sustain and develop the activity to cover not only cancer but also other non-communicable diseases like, diabetes mellitus, cardiovascular diseases, stroke etc. Overall the disease informatics infrastructure would enable capture, analyse, apply and reuse knowledge of research results. The permanent centre would lay emphasis on developing software and innovations in disease informatics
Overall Justification

Against the above background there appears to be an urgent need to set up disease registers covering the above non-communicable diseases with clearly defined objectives, specific coverage areas and short and long term research goals.
Since the NCRP has been in existence for over two decades, the research data base so generated should be harnessed for furthering aetiological, epidemiological, clinical and control research
The future of the NCRP therefore lies in the following areas:

  1. Further expansion of the network of cancer registration so as to cover more areas of the country;
  2. Undertake research studies supported by in-depth laboratory component;
  3. Establish closer coordination in planning, monitoring and evaluating the activities under the National Cancer Control Programme;
  4. Involve clinical colleagues in assessing and evaluating patient care through the registry network.
  5. Continue development and strengthening of human resource development in cancer registration and epidemiology.
The newer disease registers on Diabetes, CVD and Stroke should focus initially on data base generation in a standard and reliable way.
All of the above needs to be achieved through rapid integration of recent advances in electronic information technology so as to achieve the maximum results in terms of aetiological research, assessing and evaluating patterns of patient care and in monitoring control of these diseases. The advantages of using IT as a tool for are:
  • Enables easy access to information on disease;
  • Drastically reduces the time and effort needed to generate and use information;
  • Facilitates rapid translation of information to research observations;
  • Promotes and intensifies uniformity and standardisation of methods in collating and recording data;
  • Creates interface among research departments (basic, clinical and population based);
  • Enhances swift coordination of results in different disciplines simplifying multi-disciplinary research including bridging studies;
Overall the informatics infrastructure would enable capture, analyse, apply and reuse knowledge of research results.

Over the years the Coordinating Unit has become a beehive of IT enabled software programme development. In the past three years it has been estimated by software experts that over 500 man years of programming by the staff of the Unit has gone into the development of various software modules. This includes development of several web-based unique modules for the first time anywhere.



Against the above background, there is therefore an urgent need for strengthening the NCRP and initiating such activity in other diseases (CVD, Diabetes, Stroke) by the setting up of a permanent ICMR ‘National Centre for Disease Informatics and Research’.


 

Copyright © 2015. National Centre for Disease Informatics and Research, Bangalore.