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International Association of Cancer Registries

International Association of Cancer Registries. Course on Analysis and Presentation of Cancer Registry Data Entebbe, Uganda 11-12 September 2005. Course on Analysis and Presentation of Cancer Registry Data. Basic principles of population-based cancer registration Risto Sankila

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International Association of Cancer Registries

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  1. International Association of Cancer Registries Course on Analysis and Presentation of Cancer Registry Data Entebbe, Uganda 11-12 September 2005

  2. Course onAnalysis and Presentation of Cancer Registry Data Basic principles of population-based cancer registration Risto Sankila Finnish Cancer Registry, Helsinki Tampere School of Public Health Finland

  3. Cancer registration: Basic principles Definition: • The process of continuing, systematic collection of data • on the occurrence and characteristics of reportable neoplasms • to assess and control their impact on the community 7/10/00/RS

  4. Cancer registration: Basic principles Brief history: • First population-based registries • Hamburg 1929 • New York State 1940 • Connecticut 1941 (retr. 1935) • Denmark 1943 • Finland 1953 • IARC 1965 • IACR 1966 • ENCR 1989 7/10/00/RS

  5. Cancer registration: Basic principles Administration: • Creator/owner/payer/user • Government, Ministry of Health, Board of Health • Local health authority • Cancer centre, Hospital, Pathol. laboratory • Cancer Society • University • Affects legal status (compulsory etc.) • Cancer should be a notifiable disease 7/10/00/RS

  6. Cancer registration: Basic principles • Reasons for cancer registration • Administration (nation, health district, hospital) for planning purposes • counting patients, doctors, beds, money • setting priorities for cancer control • Public health interest • estimating cancer burden (incidence and mortality) • following trends over time • targeting interventions 7/10/00/RS

  7. Cancer registration: Basic principles • Reasons for cancer registration • Assessing outcome (patient care) • mortality, survival rates • clinical, national programme • comparing results, new diagnostic facilities • Health education • planning campaigns • patient information 7/10/00/RS

  8. Cancer registration: Basic principles • Reasons for cancer registration • Informing the public • correct data for media • suspected epidemics • ad hoc statistics • Teaching • cancer epidemiology • epidemiological methods • general health care planning, prevention... 7/10/00/RS

  9. Cancer registration: Basic principles • Reasons for cancer registration • Research • Descriptive epidemiology • Analytical epidemiology • Clinical epidemiology (not clinical trials!) • Occupational epidemiology • Genetic epidemiology … etc. • Survival analysis • Evaluating interventions (e.g., screening programme) 7/10/00/RS

  10. Cancer registration: Basic principles • Setting up a cancer registry • advisory committee • purposes • co-operation and support of medical community • NOT A ONE-WAY STREET • population data • registration area vs. hospital catchment area • legal aspects and confidentiality • personnel (incl. training) • finance, continuity, escalation 7/10/00/RS

  11. IARC Summer School on Cancer Registration and Applications in Epidemiology 03-23 May 2000, Lyon, France Cancer registration: Variables minimal information additional items 4/5/00/RS

  12. Cancer registration: Variables Minimal information depends on purpose, but usually universal quality over quantity of information use standard codes if available personal tumour 4/5/00/RS

  13. Cancer registration: Variables Minimal information: patient identification names sex date of birth or age at incidence date 4/5/00/RS

  14. Cancer registration: Variables Minimal information: tumour characteristics incidence date most valid basis of diagnosis topography, i.e. primary site morphology, i.e. histology behaviour source of information 4/5/00/RS

  15. Cancer registration: Variables Minimal information: tumour characteristics incidence date most valid basis of diagnosis topography, i.e. primary site morphology, I.e. histology behaviour source of information 4/5/00/RS

  16. Incidence date Order of declining priority: 1. Date of first histological or cytological confirmation of this malignancy (with the exception of histology or cytology at autopsy) in the following order: a) date when the specimen was taken (biopsy) b) date of receipt by the pathologist c) date of the pathology report. 2. Date of admission to the hospital because of this malignancy. 3. When evaluated at an outpatient clinic only: date of first consultation at the outpatient clinic because of this malignancy. 4. Date of diagnosis, other than 1, 2 or 3. 5. Date of death, if no information is available other than the fact that the patient has died because of a malignancy. 6. Date of death, if the malignancy is discovered at autopsy. 4/5/00/RS

  17. Cancer registration: Variables Minimal information: tumour characteristics incidence date most valid basis of diagnosis topography, i.e. primary site morphology, I.e. histology behaviour source of information 4/5/00/RS

  18. Basis of diagnosis Non Microscopic Microscopic Unknown 4/5/00/RS

  19. Basis of diagnosis 0 Death Certificate Only The only information to the registry is from a death certificate. Non Microscopic 1 Clinical Diagnosis made before death, but without the benefit of any of the following (2-7) 2 Clinical investigation To include all diagnostic techniques, including x-ray, endoscopy, imaging, ultrasound, exploratory surgery (e.g., laparotomy) and autopsy, without a tissue diagnosis. 4 Specific tumour markers To include biochemical and/or immunological markers which are specific for a tumour site (Table 2). Microscopic 5 Cytology 6 Histology of a metastasis 7 Histology of a primary tumour 9 Unknown 4/5/00/RS

  20. Basis of diagnosis Non Microscopic 4 Specific tumour markers To include biochemical and/or immunological markers which are specific for a tumour site (Table 2). Human Chorionic Gonadotrophin (HCG) in diagnosis of choriocarcinoma Prostate Specific Antigen (PSA) in diagnosis of prostate carcinoma Alphafetoprotein (AFP) in diagnosis of hepatocellular carcinoma Catecholamine degradation products (HVA, VMA) in diagnosis of neuroblastoma Elevated serum immunoglobulins Myeloma, Waldenström's macroglobulinaemia Urinary immunoglobulins Myeloma (light chain excretion > 1g/24hr)

  21. Basis of diagnosis Non Microscopic 1 Clinical 2 Clinical investigation 4 Specific tumour markers Microscopic 5 Cytology Examination of cells whether from a primary or secondary site, including fluids aspirated using endoscopes or needles. Also to include the microscopic examination of peripheral blood films and trephine bone marrow aspirates. 6 Histology of a metastasis Histological examination of tissue from a metastasis, including autopsy specimens. 7 Histology of a primary tumour Histological examination of tissue from the primary tumour, however obtained, including all cutting techniques and bone marrow biopsies. Also to include autopsy specimens of a primary tumour.

  22. Basis of diagnosis Combinations of specific morphology codes, and non-microscopic basis of diagnosis codes, which are considered acceptable (incomplete list) MORPHOLOGY Most Valid Code Description Basis Other criteria 9590 Lymphoma NOS 1 or 2 9800 Leukaemia NOS 1 or 2 8720 Melanoma 1 or 2 9140 Kaposi's sarcoma 1 or 2 HIV positive (exc. Africa) 8960 Nephroblastoma 2 Age 0-8 9100 Choriocarcinoma 4 Female, and age 15-49 9500 Neuroblastoma 2 or 4 Age 0-9 9510 Retinoblastoma 2 Age 0-5 9732 Myeloma 4 Age 40+ 8170 Hepatocellular carcinoma 4 9380 Glioma 2 C71.7 (brain stem) 9530-9539 Meningioma 2 C70 (meninges)

  23. Cancer registration: Variables Minimal information: tumour characteristics incidence date most valid basis of diagnosis topography, i.e. primary site ICD-O-3 morphology, I.e. histology ICD-O-3 behaviour source of information 4/5/00/RS

  24. Cancer registration: Variables Minimal information: tumour characteristics incidence date most valid basis of diagnosis topography, i.e. primary site morphology, I.e. histology behaviour source of information 4/5/00/RS

  25. Cancer registration: Variables Minimal information: tumour characteristics: behaviour 0. Benign 1. Uncertain whether benign or malign Borderline malignancy 2. Carcinoma in situ 3. Malignant 4/5/00/RS

  26. Cancer registration: Variables Minimal information: tumour characteristics incidence date most valid basis of diagnosis topography, i.e. primary site morphology, I.e. histology behaviour source of information 4/5/00/RS

  27. Cancer registration: Variables Minimal information: tumour characteristics: source of information comprehensive coding of all sources code for each hospital, laboratory etc. code for type of source name of source date of notification number of hosp or lab. record death certificate 4/5/00/RS

  28. Cancer registration: Variables Optional information depends on purpose and resources registry specific, local conditions quality over quantity of information use standard codes if available 4/5/00/RS

  29. Cancer registration: Variables Optional information identification demographic and cultural items tumour and its investigations treatment outcome sources of information 4/5/00/RS

  30. Cancer registration: Variables Optional information: identification registry index number for each patient personal identification number names 4/5/00/RS

  31. Cancer registration: Variables Optional information: demographic and cultural items sex date of birth address place of birth marital status age at incidence date 4/5/00/RS

  32. Cancer registration: Variables Optional information: demographic and cultural items nationality ethnic group religion occupation and industry year of immigration country of birth of father and/or mother 4/5/00/RS

  33. Cancer registration: Variables Optional information: tumour and its investigations incidence date most valid basis of diagnosis certainty of diagnosis method of first detection primary site (topography) histological type (morphology) behaviour 4/5/00/RS

  34. Cancer registration: Variables Optional information: tumour and its investigations clinical extent of disease before treatment surgical and pathological extent of disease before treatment (stage) TNM sites of distant metastases multiple primaries laterality 4/5/00/RS

  35. Cancer registration: Variables Optional information identification demographic and cultural items tumour and its investigations treatment outcome sources of information 4/5/00/RS

  36. Cancer registration: Variables Optional information: outcome date of last contact status at last contact dead, alive, lost from follow-up, emigrated date of death cause of death place of death 4/5/00/RS

  37. IARC Summer School on Cancer Registration and Applications in Epidemiology 3-23 May 2000, Lyon, France • Data presentation • cancer incidence report • special reports to health professionals • special reports to administration • special reports to press/laymen • scientific reports 18/5/2000/RS

  38. IARC Summer School on Cancer Registration and Applications in Epidemiology 03-23 May 2000, Lyon, France • Data presentation • Minimal data for annual report • background information • presentation and evaluation of results • tabular section • graphics ? 18/5/2000/RS

  39. IARC Summer School on Cancer Registration and Applications in Epidemiology 03-23 May 2000, Lyon, France Minimal data for annual report • background information • description of the Registry • description of the registration procedures • reportable diseases • coding systems • data definitions • acknowledgements • list of publications 18/5/2000/RS

  40. IARC Summer School on Cancer Registration and Applications in Epidemiology 03-23 May 2000, Lyon, France Background information • population covered by the registry • age-specific population table and/or pyramid • description of the statistical terms 18/5/2000/RS

  41. IARC Summer School on Cancer Registration and Applications in Epidemiology 03-23 May 2000, Lyon, France Evaluation of findings • major results • most common sites • consistency over time • trends • quality control indices • precautions 18/5/2000/RS

  42. IARC Summer School on Cancer Registration and Applications in Epidemiology 03-23 May 2000, Lyon, France Tabular presentation • total and age-specific frequencies • incidence rates • age-specific • crude • age-standardised • cumulative • truncated • other data ? (regional, trends, mortality…) 18/5/2000/RS

  43. IARC Summer School on Cancer Registration and Applications in Epidemiology 03-23 May 2000, Lyon, France Tabular presentation • full text describing the contents of the table • if rates - denominator + no of cases • frequency distributions up to 100% • exclusions 18/5/2000/RS

  44. Course onAnalysis and Presentation of Cancer Registry Data Basic concepts of population-based cancer registration Risto Sankila Finnish Cancer Registry, Helsinki Tampere School of Public Health Finland

  45. Definitions • Incidence • Mortality • Prevalence • Survival 9/5/00/RS

  46. Definitions • Incidence • Mortality • Numbers of new cases or deaths • Cases or deaths per 100 000 persons (-years) • in a given population • in a given time (usually calendar-year) 9/5/00/RS

  47. Definitions • Prevalence • Patients still alive at a given date (i.e., 1 Jan. 2005) 9/5/00/RS

  48. Definitions • Survival • Proportion (%) of patients still alive after a certain time since diagnosis (e.g. 5 years after diagnosis) 9/5/00/RS

  49. Prerequisites • Nominator: number of new cases (deaths) • Denominator: • defined (target) population at risk • Time period • Person-years at risk • Incidence rate 9/5/00/RS

  50. Number of cases • Nominator: number of (all new) cases • Definition of ‘case’ • e.g., basis of diagnosis, prevalent cases • Coverage of the registry • completeness of registration • cases from target population only • death certificates • Diagnostic resources/activities • screening programmes 9/5/00/RS

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