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My years in the Finnish Cancer Registry

My years in the Finnish Cancer Registry. Timo Hakulinen Finnish Cancer Registry University of Ljubljana, February 2013. FINNISH CANCER REGISTRY. - founded 1952 - operated by Cancer Society of Finland - 30% of budget from the state - 40 persons, one-half with university education background

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My years in the Finnish Cancer Registry

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  1. My years in the Finnish Cancer Registry Timo Hakulinen Finnish Cancer Registry University of Ljubljana, February 2013

  2. FINNISH CANCER REGISTRY - founded 1952 - operated by Cancer Society of Finland - 30% of budget from the state - 40 persons, one-half with university education background - 100 publications and five doctoral dissertations per year

  3. Finnish Cancer Registry • 40 000 clinical notifications/year • 750 notifiers • 15 % electronically • 90 000 notifications from laboratories/year • 45 notifiers • almost all electronically • 19 000 death certificates (11 000 deaths due to cancer) • from central statistical office • all electronically • 28 000 new cancer cases/year + 15 000 basal cell carcinomas of the skin • Information on more than one million cancer patients in the Registry

  4. ESSENTIAL INFORMATION • Person • name / identifier • residence • birth date • date of death • Tumour • site • date of diagnosis • histology • where to find more info

  5. MOTIVATION FOR CANCER REGISTRATION The data are used, prerequisites: • legislature • resources (personnel, funding)

  6. Areas of operation • cancer causes • prevention • early detection • treatment • cancer policy • evaluation of programs and organizations • cost analyses, at least basis

  7. Different target groups of cancer registry • general population (information) • authorities (description, evaluation) • physicians, notifiers (feedback, methodological help) • scientific community, mankind (research, materials) • specific groups (follow-up, education)

  8. Knowledge, not belief Examples: • Chernobyl • local drinking water • mobile phones • dumps

  9. Why not general population sample?

  10. Research conducted by • registry staff • collaborators & registry staff • other research workers • doctoral & other students • international collaboration

  11. Descriptive epidemiology • Geographic variation, maps • Time trends (age, cohort, period) - monitoring - prediction • Spatiotemporal description: time-dependent maps • Variation by socioeconomic groups

  12. Important for cancer registries • registration should be close to 100% everywhere • guarantee for success of scientific studies needed

  13. When apparent local risk elevation, check • expected numbers (different standards) • incidence in neighbouring or similar areas • historical development • incidence of other cancers

  14. Occupation cohorts to be followed up cancer • Finnish-Norwegian interview cohort (*) occupation, smoking, symptoms • Tobacco factory • Glass blowers • Rubber industry • Graphical workers • Herbicide sprayers • Paper industry (*) • Sawmills (*) • Asbestos mine (*) • Glass wool control: bottles • Petrochemical industry • Formaldehyde • Shipyard (*) • PCB • Radiation x-ray nurses etc (*) good information on smoking

  15. Finnish Mobile Health Clinic Study Smoking-adjusted Site Cases HPV16+ Risk ratio (95% CI) Oesophagus 39 21 13.1 (1.6, 108) Larynx 37 3 0.2 (0.0, 2.0) Lip, tongue, salivary gland 60 7 0.6 (0.2, 2.1) Other oral 29 1 0.4 (0.0, 7.1) Dillner et al.: Brit.Med.J. 1995

  16. Important assisting registers • Population registry - central - local • Causes of death • Emigrations

  17. Countrywide cancer survival • Monitoring of rates • Estimation of resources (basis) • Baseline for planning clinical trials • Studies on equity

  18. Screening (mass-screening registry) • cervix uteri ( 260 000 invitations/year) • breast (300 000 invitations/year) • colorectum (75 000 invitations/per year, not based on law) • prostate (trial, largest study in the world, European collaboration, active phase terminated)

  19. Methodological research • small area incidence statistics • incidence, prevalence and mortality prediction methods • relative survival ratios for cancer patients

  20. Examples of research results in 2011 • Descriptive epidemiology • lung cancer predictions for Finland and Poland based on alternative change scenarios of smoking habits • cancer risks of immigrants • Data protection • dangers of excessive European harmonization • Radiation • cancer risks after the Chernobyl accident • mobile phones and brain cancer risk • Pregnancy and delivery • pregnancies, births and children’s health in former cancer patients in childhood and young adulthood • Infections • relationship between HPV 6 and HSV 2 infections and risk of cervical cancer • stomach cancer risk after treatment of helicobacter pylori infection • Occupation • shift work and breast cancer risk

  21. Centralization important: In the same place - registration - statistics - research Research improves the quality of the registered data and statistics.

  22. Finnish Cancer Registry Collaboration with - National Institute for Health and Welfare - Institute of Occupational Health - Radiation and Nuclear Safety Authority - School of Public Health, Univ. of Tampere - other universities - Nordic cancer registries - International Agency for Research on Cancer (WHO) - EU Networks - National Cancer Institute (USA) - many others

  23. Education • International courses (survival analysis, predictions, geographic analysis) • Doctoral programs in Public Health (Universities, Research institutes) • Professorship in cancer epidemiology (University of Tampere) • Nordic Summer School in Cancer Epidemiology • Doctoral dissertations (guidance, materials)

  24. Prerequisities of good cancer registration (after Jensen et al. 1991) - Basic health services - Stability of population - Identity of individuals - Population numbers - Trained personnel - Data processing - Confidentiality measures - Follow-up - Funding - Feedback - Legal basis - Good relations - Scientific research

  25. Discussion • neutral expert body • applicability of measures in Finland not necessarily the same as elsewhere • real data in evaluation, not only simulated data • non-experimental research important: real doses and associations between exposures • influence on science policy, laws, directives and other infrastructures, e.g., biobanking • stakeholder the population, not, e.g., the scientists

  26. Finnish Cancer Registry Identifiable data delivery • to researchers through application to the Ministry of Health (1 month processing time) • to registered patients no delivery. They are advised to contact the reporting hospitals.

  27. To be balanced • individual’s right of privacy protection vs. • Right of individual (society, mankind) to benefit from research knowledge based on data registers

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