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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
- 100 publications and five doctoral dissertations per year
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
ESSENTIAL INFORMATION
• Person– name / identifier– residence– birth date– date of death
• Tumour– site– date of diagnosis– histology– where to find more info
MOTIVATION FOR CANCER REGISTRATION
The data are used, prerequisites:– legislature– resources (personnel, funding)
Areas of operation
• cancer causes
• prevention
• early detection
• treatment
• cancer policy
• evaluation of programs and organizations
• cost analyses, at least basis
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)
Knowledge, not belief
Examples:
• Chernobyl
• local drinking water
• mobile phones
• dumps
Why not general population sample?
Research conducted by
• registry staff
• collaborators & registry staff
• other research workers
• doctoral & other students
• international collaboration
Descriptive epidemiology
• Geographic variation, maps
• Time trends (age, cohort, period)- monitoring- prediction
• Spatiotemporal description: time-dependent maps
• Variation by socioeconomic groups
Important for cancer registries
• registration should be close to 100% everywhere
• guarantee for success of scientific studies needed
When apparent local risk elevation, check
• expected numbers (different standards)
• incidence in neighbouring or similar areas
• historical development
• incidence of other cancers
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
Finnish Mobile Health Clinic Study
Smoking-adjustedSite 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
Important assisting registers
• Population registry
- central
- local
• Causes of death
• Emigrations
Countrywide cancer survival
• Monitoring of rates
• Estimation of resources (basis)
• Baseline for planning clinical trials
• Studies on equity
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)
Methodological research
• small area incidence statistics
• incidence, prevalence and mortality prediction methods
• relative survival ratios for cancer patients
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
Centralization important:
In the same place
- registration
- statistics
- research
Research improves the quality of the
registered data and statistics.
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
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)
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
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
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.
To be balanced
• individual’s right of privacy protection
vs.
• Right of individual (society, mankind) to benefit from research knowledge based on data registers