Role of Cancer Registries for Cancer Control MEASURES

Role of Cancer Registries for Cancer Control

MEASURES AND STRATEGIES FOR CANCER SURVEILLANCE AT THE POPULATION LEVEL. Wingo et al 2005 Cancer Control Measures Population Core Surveillance Measures Surveillance Strategy Extended Surveillance Measures Prevention Healthy Risk factors Early Detection New Diagnosis Incidence Treatment/ Care Living with Cancer Survival Palliative end-of-Life Care Dying from Cancer Mortality • By Cancer Type • By stage Population Surveys Attributable Risk PBCRs Prevalence Associated Economic Costs Vital statistics DALYs

What is a Registry? Ø Organized system of continuing, systematic collection, storage, retrieval, analysis and dissemination of information on the occurrence and Data characteristics of a) Persons who have either a particular disease, Information b) A condition (e. g. , a risk factor) that predisposes to the occurrence of a healthrelated event Knowledge c) Prior exposure to substances (or circumstances) known or suspected to cause adverse health effects Action § Continuing: main feature that distinguishes registration from a survey § Systematic: implies complete coverage of the various sources of data in a systematic manner

What is Cancer Registry? Process of continuing, systematic collection of data on the occurrence and characteristics of reportable diseases; • Continuing: main feature that distinguishes registration from a survey - which is for a limited period of time • Systematic: implies complete coverage of the various sources of cases in a given population in a systematic manner Types of Registries Population Based, Hospital Based, Patterns of care and survival studies, Special purpose: Environment – Exposure related, by Anatomical site of cancer, Age group-Childhood, Morphology specific (Retinoblastoma) Disease Registry Pathway Analysis & Storage Systematic collection disease data interpretation Periodic report publication and dissemination Prevention, Control and Policy level action

Types of Registries Disease based • National Cancer Registry Programme • National Stroke Registry Programme • National Heart Failure Registry Programme Procedure/ Therapy based/Health services registries • Management of Acute Coronary Event Registry (MACE) • Patients exposed to a healthcare product, such as a device – stent • Pregnancy registries for drug exposures Evaluation/ Quality improvement registries • Evaluation of the effectiveness of evidence-based program guidelines on improving treatment

Research Questions Appropriate for Registries “Registry is not a means in itself but, means towards an end” Assessing natural history and clinical patterns • Estimating the magnitude of a problem • Determining the underlying incidence or prevalence rate of a condition • Examining trends of disease over time Patterns of care and survival • Assessing service delivery and identifying groups at high risk • Documenting the types of patients served by a health provider • Describing and estimating survival Determining • clinical effectiveness • cost-effectiveness, or comparative effectiveness of a test or treatment, including for the purpose of determining reimbursement. Monitoring adverse events Improving quality of care • Measuring or monitoring safety and harm associated with the use of specific products and treatments, including conducting comparative evaluation of safety and effectiveness. • Measuring or improving quality of care, including conducting programs to measure and/or improve the practice of medicine and/or public health.

Data Sources for Registries Patient-reported data Clinician-reported data • Challenges in obtaining complete information • Useful when timing of follow-up may not be concordant with timing of clinical visit. • More specific information than available from coded data or medical record. Medical chart abstraction • Use of abstraction and strict coding standards increases the quality and interpretation of data abstracted. Electronic health records (EHRs) • Potential for comprehensive view of patient medical and clinical history Institutional or organizational databases • Diagnostic and treatment information (e. g. , pharmacy, laboratory, blood bank, radiology). Administrative databases • Useful for tracking health care resource utilization and cost-related information. Death Indexes • Civil registration system – Medical Certificate of cause of death data

Uses of Health Data Registries Monitoring trends in health and disease Allocating resources – priority setting, health care planning Improving the quality of health care interventions Monitor health impact assessment Helping establish a communication network Ensuring better global data on disease surveillance Leading to further research

National Cancer Registry Programme in India 1981 ICMR started the Cancer registry operations Atlas on Cancer in India was initiated Published: Comprehensive NCRP Report 19812000 20012002 Cancer burden in North East 20032016 No. of PBCRs Centres -33 First Annual Report of 1982 No. of HBCRs Centres Registered– 177 No. of PBCR Centres Registered – 6 6 North East PBCRs initiated No. of HBCR Centres Registered – 6 First all India report 2001 - 2002 Cancer Atlas provided the geographical pathology of cancer Patterns of Care Studies for Cervix, Breast and Head & Neck launched Punjab Cancer Atlas 20172020 No. of PBCRs Centres -38 No. of HBCRs Centres -250 Population Based Cancer Survival for Cervix, Breast and Head & Neck launched Haryana Cancer Atlas Backbone of Cancer Control Initiative in India 2021

GLOBAL CANCER DATA AVAILABILITY

NCRP Activities Recent Reports

Hospital Based Cancer Registries Population Based Cancer Registries

Importance of cancer registry • Source of accurate and complete national level cancer data • Provides information on aetiology, diagnosis and treatment of cancer • to determine cancer patterns among various populations or subpopulations, • Monitor cancer trends over time • Guide planning and evaluation of cancer control efforts • To help prioritize health resource allocations • To advance clinical, epidemiological, and health services research.

Population Based Cancer Registries ○ Records all new cases in a defined population (Specified geographical area such as a district or state) ○ Population level incidence, prevalence and pattern ○ Overall patient survival in the community ○ Research – descriptive and analytical studies ○ Public health planning and policies ○ Provides indicator for cancer control

Population Based Cancer Registry NCDIR-NCRP

Hospital Based Cancer Registries ○ Maintain data on all patients diagnosed and/or treated for cancer at a particular facility. ○ FOCUS on clinical care, treatment and outcome ○ Helps in active follow up and clinical down staging ○ Assessment of hospital care and planning ○ Professional education and research ○ Promotes institution based cancer control activities ○ Contributes to PBCRs in the respective areas

CHANGE IN CRUDE ANNUAL INCIDENCE RATE OF ALL CANCERS TOGETHER IN THE STATES OF INDIA, 1990 AND 2016 India State-Level Disease Burden Initiative Cancer Collaborators. The burden of cancers and their variations across the states of India: the Global Burden of Disease Study 1990 -2016. Lancet Oncol. 2018 Oct; 19(10): 1289 -1306. doi: 10. 1016/S 1470 -2045(18)30447 -9. Epub 2018 Sep 12. Erratum in: Lancet Oncol. 2018 Oct 3; : PMID: 30219626; PMCID: PMC 6167407.

Cancer numbers are expected to rise from 13 lakh in 2020 to 15 lakh in 2025 Projection of Cancers 2020 2025 No. of cases (%) All Sites 1392179 100. 0 1569793 100. 0 Tobacco Related Cancers 377830 27. 1 427273 27. 2 Gatro Instestinal Tract 273982 19. 7 310142 19. 8 Cervix Uteri 75209 5. 4 85241 5. 4 Breast 205424 14. 8 232832 14. 8 Corpus Uteri and Ovary 70400 5. 1 79765 5. 1 Lymphoid and Haematopoietic Malignancies 124931 9. 0 138592 8. 8 Prostate 41532 3. 0 47068 3. 0 Central Nervous System 32729 2. 4 36258 2. 3 Broad Anatomical Sites of Cancer

Variations Comparison of all cancer sites’ ageadjusted incidence rates (AARs) of all population-based cancer registries, 2012 -2016. AARs are in blue and crude rates are given in parentheses in red. Mathur P, Sathishkumar K, Chaturvedi M, Das P, Sudarshan KL, Santhappan S, Nallasamy V, John A, Narasimhan S, Roselind FS; ICMR-NCDIR-NCRP Investigator Group. Cancer Statistics, 2020: Report From National Cancer Registry Programme, India. JCO Glob Oncol. 2020 Jul; 6: 1063 -1075. doi: 10. 1200/GO. 20. 00122. PMID: 32673076; PMCID: PMC 7392737.

Increasing five year trends over time in AARs among PBCRs for Breast Cancer Chaturvedi M, Vaitheeswaran K, Satishkumar K, Das P, Stephen S, Nandakumar A. Time Trends in Breast Cancer Among Indian Women Population: An Analysis of Population Based Cancer Registry Data. Indian J Surg Oncol. 2015 Dec; 6(4): 427 -34. doi: 10. 1007/s 13193 -015 -0467 -z. Epub 2015 Sep 8. PMID: 27065669; PMCID: PMC 4809853.

Relative proportion (%) of cancer sites associated with the use of tobacco Crude Rate and Age Adjusted Rate given in parentheses Source: Report of National Cancer Registry Programme (ICMR-NCDIR), Bengaluru, India 2020

RELATIVE PROPORTION (%) OF PATIENTS ACCORDING TO CLINICAL EXTENT OF DISEASE, 2012 -2016 Source: Report of National Cancer Registry Programme (ICMR-NCDIR), Bengaluru, India 2020

CANCER ATLAS OF PUNJAB STATE FOR THE YEAR 2014 -15 The main objective was to overview the pattern and incidence of cancer in the districts of Punjab state. District wise Distribution of Cancer cases Crude Rate (CR), Age Standardized Rate (ASR) Truncated Rate (TR) with Confidence Interval (CI) per 100, 000 populations in Punjab state Rates Males Females Both sexes CR CI ASR CI TR CI 39. 8 53. 7 39. 1 - 40. 5 52. 8 - 54. 6 41. 2 51. 7 40. 4 - 42. 0 50. 8 - 52. 6 73. 6 114. 2 70. 2 - 77. 0 112. 0 - 116. 4 45. 4 - 43. 7 46. 4 45. 8 - 47. 0 93. 6 92. 1 - 95. 0 Top leading site of Cancer District wise

Development of an Atlas of Cancer in Haryana State District wise Comparison of AAR- All Sites (ICD-10: C 00 -C 96) Males Females

Digital Health Objectives (ICMR-NCDIR’s check list) Digital Health Systems Data Analytics & Research • NCD Registries • Data Collection, Cleaning and Data Dissemination (Android app, Printed Books) National & Regional Registries Governance using Digital Tools • Cancer Registries(38 PBCRs, 250 HBCRs) • Monitoring of registries, disease pattern, trends transcending to policy implementations of public health relevance Open Standards • ICD 10, ICD-O-3, SNOMED-CT Integration • Collaboration with several state governments Cooperative Partnerships • Collaborative efforts of registries & surveys in multicentric studies • Both Private and Government institutions page 26

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Cancer Screening Programme and Cancer Registry The Missing Link Assessment of Cancer control • This approach can be used to evaluate the success of interventions. Referred? Early detection and screening • Should prevent invasive disease or mortality by programmes that are designed to detect early invasive cancers Evaluating cancer care • Linking with registry data can also catalyze research into causes of the disease and the effectiveness of national or regional intervention strategies. SCREENING PROGRAMME SCREENED POSITIVE AT SUB-CENTER/ PHC/CHC/DH Seeks treatment? Loss to follow up? HOSPITAL REGISTRY

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