The document discusses establishing a National Centre for Disease Informatics and Research in Bangalore to create a national research database on diseases like cancer, diabetes, and cardiovascular diseases using information technology. It summarizes the achievements of the National Cancer Registry Programme in compiling cancer data and developing expertise in disease surveillance. The proposed center aims to strengthen existing disease databases, foster multidisciplinary research, and generate prevention strategies through integrating clinical, epidemiological and bioinformatics data.

1. Welcome to

5. Lko Leased Line Medical V P N Network Medi-Network VSAT Institute Chennai Institute Mumbai Institute Kolkata S G P G I Lucknow P G I Chandigarh A I I M S New Delhi Medical Institute City

6. Network Connectivity of 8 ICMR location for Video Conferencing 2 Mbps link ICMR Institutes in India MPLS-VPN Network Service provider’s Cloud Video conferencing equipment ERNET HQ, New Delhi Internet

7. VC facility at each ICMR site Video conferencing equipment Conference Room Layout

8. Remote/Regional Office Layout MPLS-VPN Link Router Modem Switch Video conferencing equipment Conference Room Layout

9. Virtual Classroom and Connectivity of Libraries MPLS-VPN Network Service provider’s Cloud HQ, New Delhi Virtual Classroom Internet2

11. NATIONAL CANCER REGISTRY PROGRAMME (Indian Council of Medical Research) DELHI BHOPAL MUMBAI AHMEDABAD THIRUVANANTHAPURAM CHENNAI BANGALORE ICMR HEAD QUARTERS NCRP COORDINATING UNIT POPULATION BASED REGISTRY POPULATION BASED RURAL REGISTRY HOSPITAL BASED REGISTRY DIBRUGARH SIKKIM GUWAHATI SILCHAR IMPHAL MIZORAM MONITORING UNIT OF NERCR BARSHI KOLKATA

12. Geographic Trends in cancer in India DEVELOPMENT OF AN ATLAS OF CANCER IN INDIA

21. INTERNET CENTER 2 INTERNET SERVICE PROVIDER WEB, EMAIL & DATABASE SERVER CO-ORDINATING UNIT www.canceratlasindia.org CENTER 1 Server Workstation 1 Workstation 2

22. INTERNET CANCER CENTRES INTERNET SERVICE PROVIDER WEB, EMAIL & DATABASE SERVER CO-ORDINATING UNIT Server www.canceratlasindia.org Workstation 1 Workstation 2

25. Bangalore – PBCR : 75.1 Barshi – PBCR : 36.2 Remaining No. of Districts > MAAR of any PBCR : 55 Districtwise Comparisons of MAAR with that of PBCRs under NCRP ALL SITES ( ICD 10 : C00-C96 ) - Males Source: Development of an Atlas of Cancer in India First All India Report 2001-2002. NCRP, Bangalore 81.2 83.5 85.8 89.5 90.8 97.8 101.9 103.0 103.3 106.5 106.7 107.6 114.2 119.0 125.5 126.4 155.1 217.9 0 25 50 75 100 125 150 East Sikkim (SK) Chennai - PBCR Imphal West (MR) Mumbai - PBCR Thiruvananthapuram (KL) Bhopal - PBCR Thrissur (KL) Delhi - PBCR South Goa (GA) Kollam (KL) Chandigarh (CH) Mamit (MZ) Champhai (MZ) North Goa (GA) Kolasib (MZ) Lunglei (MZ) Sechhip (MZ) Aizawl (MZ) Rate per 100,000

26. Chandigarh (106.7) North Goa (119.0) South Goa (103.3) Kollam (106.5) Kolasib (125.5) Champhai (114.2) Serchhip (155.1) Aizawl (217.9) Lunglei (126.4) Mamit (107.6) Districtwise Distribution of MAAR ALL SITES ( ICD 10 : C00-C96 ) - Males

27. Barshi – PBCR : 45.0 Remaining No. of Districts > MAAR of any PBCR : 31 Districtwise Comparisons of MAAR with that of PBCRs under NCRP ALL SITES ( ICD 10 : C00-C96 ) - Females Source: Development of an Atlas of Cancer in India First All India Report 2001-2002. NCRP, Bangalore 90.3 90.7 92.3 92.7 92.8 93.3 94.0 95.1 99.0 101.6 102.4 107.8 112.1 113.9 116.8 148.0 155.5 209.2 0 25 50 75 100 125 150 175 200 225 South Goa (GA) Kollam (KL) Pondicherry (PY) Champhai (MZ) Panchkula (HR) Imphal West (MR) Bhopal - PBCR Imphal East (MR) Bangalore - PBCR Chennai - PBCR Mumbai - PBCR Lunglei (MZ) North Goa (GA) Delhi - PBCR Kolasib (MZ) Chandigarh (CH) Sechhip (MZ) Aizawl (MZ) Rate per 100,000

28. Chandigarh (148.0) North Goa (112.1) Serchhip (155.5) Aizawl (209.1) Lunglei (107.8) Kolasib (116.8) Districtwise Distribution of MAAR ALL SITES ( ICD 10 : C00-C96 ) - Females

29. International Comparisons of AAR with that of PBCRs under NCRP TONGUE ( ICD 10 : C01-C02 ) - Males Source: Development of an Atlas of Cancer in India First All India Report 2001-2002. NCRP, Bangalore

30. Mumbai – PBCR : 4.5 Bangalore – PBCR : 3.1 Barshi – PBCR : 1.4 Remaining No. of Districts > MAAR of any PBCR : 17 Districtwise Comparisons of MAAR with that of PBCRs under NCRP TONGUE ( ICD 10 : C01-C02 ) - Males Source: Development of an Atlas of Cancer in India First All India Report 2001-2002. NCRP, Bangalore

31. Gandhinagar (0.8) Daman (1.0) Kurukshetra (0.9) Chamoli (1.0) Bhandara (1.1) Perambalur (0.8) West Sikkim (4.4) East Sikkim (3.4) East Khasi Hills (1.4) West Kameng (12.6) Lower Subhansiri (1.5) West Siang (1.7) North Cachar Hills (2.4) Tuensang (1.3) Mokokchung (2.4) Kohima (19.4) Senapati (3.5) Imphal West (7.4) Tamenglong (5.5) Dimapur (2.2) Imphal East (3.2) Ukhrul (12.7) Thoubal (3.7) Bishnupur (4.6) Chandel (4.4) Wokha (5.2) Churachandpur (10.2) Champhai (6.1) Serchhip (21.7) Aizawl (8.3) Kolasib (5.0) Lunglei (11.6) Mamit (9.7) Districtwise MAAR / 100,000 NASOPHARYNX ( ICD 10 : C11 ) - Males

32. Nalbari (1.5) Kamrup (1.7) Darrang (1.1) Marigaon (2.7) Changlang (1.9) Jorhat (1.8) Lunglei (3.4) Lawngtlai (3.8) Aizawl (2.0) Barpeta (1.9) Bongaigaon (1.7) Dibrugarh (1.8) Papum Pare (1.9) East Sikkim (2.1) West Khasi Hills (1.0) Nagaon (0.9) Karimganj (0.8) Thoubal (0.9) Cachar (0.8) Dimapur (1.5) Golaghat (1.0) Panchkula (1.4) Mahendragarh (0.8) Ajmer (1.0) Sabar Kantha (0.8) Gandhinagar (2.1) Mahesana (1.6) Patan (0.8) Kheda (1.5) Junagadh (1.1) Surendranagar (0.9) Ahmedabad (1.4) Anand (1.8) Vadodra (0.8) Aligarh (1.1) North Goa (2.0) South Goa (1.7) Dakshina Kannada (1.0) Kodagu (2.7) Thrissur (1.2) PHARYNX ( ICD 10 : C14 ) - Males Districtwise MAAR / 100,000

36. International Journal of Cancer Early View (Articles online in advance of print) Published online: 22 April 2005 Epidemiology Geographic pathology revisited: Development of an atlas of cancer in India

38. Data entry screen from Cancer Atlas website

52. Advantages of using Information Technology (IT) as a tool for Cancer Research - Essentially it would create A System for Flow of Standardised Information on Cancer

54. Overall the cancer informatics infrastructure would enable capture, analyse, apply and reuse knowledge of research results

55. NATIONAL CENTRE FOR DISEASE INFORMATICS AND RESEARCH IN BANGALORE

56. Objectives and Broad Mission Statements 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. The newer areas that the forthcoming Centre aims is towards generation of more data that will be helpful in developing effective prevention strategies and programmes so as to provide better care and support to patients. This is besides research into mechanisms of causation, through a combination of field, clinic and laboratory studies. A. Objectives

61. Achievements / Targets expected The Coordinating Unit of NCRP has taken a lead by demonstrating capability of conducting research in various aspects of cancer. It enjoys a unique position of being a leader in coordinating and undertaking epidemiologic studies on cancer. The Coordinating Unit has developed expertise in planning, directing, developing, coordinating and evaluating a national programme of cancer surveillance. Further, it has analysed and prepared reports on magnitude, patterns and incidence of cancer in different population and hospital settings. It is mainly through the NCRP and perhaps for only this disease in this country that we have actual incidence rates (not estimates).

62. Through the ‘Cancer Atlas’ the Unit has used recent advances in IT to successfully collate, check, analyse and interpret data thereby creating a platform for establishing a National Electronic Cancer Surveillance System. The Unit has standardised various epidemiologic questionnaires and manuals including patient information forms (and manuals) for specific sites of cancer (breast, cervix, head and neck). A systematic plan of action is underway to assess and evaluate clinical stage and outcome based on details of treatment. A strategy for follow-up has been evolved. Software including web-based programmes are in place for data entry on the internet by each of the five hospital based cancer registries and 35 other centres in different parts of the country. Achievements / Targets expected (Contd…)

63. Achievements / Targets expected The future centre’s mission is to carry forward these activities in a comprehensive manner so as to yield research results of long standing value. To accomplish this mission, the goal is to bring together a multi-disciplinary team of scientists in epidemiology, public health, bio-statistics, clinicians, molecular biologists and those in other related fields. The expected target is to provide on-line electronic national cancer data-base for research, patient care outcome and cancer control. A national cancer research data base has indeed been created and it needs to be sustained and enlarged both horizontally to cover wider areas and vertically to undertake in-depth research.

66. MAIN OBJECTIVE Sustain and Develop a National Research Data Base on Cancer, Diabetes, Stroke, and other Cardiovascular Diseases using advances in IT, through a National Collaborative network, so as to undertake aetiological, epidemiological, clinical and control research in these areas

68. iv. Conduct studies in populations with exceptional or changing incidence rates or unusual environmental exposures. v. 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 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, NIMHANS etc. Specific Function Statements (Contd…)

69. vi. The centre will create a Directory of on-going research in India on cancer, diabetes, CVD and stroke. vii. Psychological studies on cancer, diabetes, CVD and stroke will be pursued and Quality of Life studies will focus on rehabilitation needs. Specific Function Statements (Contd…)