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The Finnish Cancer Registry is a statistical and epidemiological research institute maintained by the Cancer Society of Finland. The CSF also maintains the national cancer registry of the National Institute for Health and Welfare (THL), which includes mass screening registries for breast cancer and cervical cancer.

The CSF is subject to requirements for the processing, classification and information security of documents of state administration authorities (Government Decree on Information Security in State Administration 681/2010, the so-called Information Security Decree).

The CSF’s data security officer, data security manager and data security working group are responsible for data security at the CSF. CSF staff regularly receive training in the handling of data and guidance on general data security matters.

The Cancer Registry’s webpages have become available during 2019, published in Finnish, Swedish and English. The purpose of the Cancer Registry’s com-munication strategy is to make the research institution known and to reach those groups for whom the Cancer Registry can provide useful data. The Cancer Registry provides researched population-level information on the cancer burden and cancer screening in Finland.

Cancer registration

Cancer cases are compiled into a national registry through individual notifications. They are coded in a case summary suitable for statistical and research use. Figures from Statistics Finland on the cause of death of registered individuals and their socioeconomic details (status, profession and education) are updated annually at the Cancer Registry. The time of death and information on the municipality of residence at the turn of the year, as well as data on emigration and immigration, are obtained from the population information system via THL.

Healthcare organisations statutorily provide the Cancer Registry with information on new cancer cases, either by completing an online form, as files retrieved from information systems or by using a paper form. In 2019, the Cancer Registry’s close cooperation continued with all university hospitals in Finland to gradually shift to an automated compilation of clinical cancer notifications and get rid of paper forms completely. The new specifications were published on the code server in spring 2018. Work was started during the year to test the electronic transfer of data with two suppliers, but the number of notifications was still too small. During 2019, resolute efforts were made to inform data providers about the new data models and the quality of data content. At the same time, new ways of extracting notifications have been developed. For the statistical year 2017 (published 2019), a clinical cancer report is still missing in about 60% of new cases.

A new version of the online form for cancer notification was published in winter 2019. The new form aims to better serve haematologists in particular when diagnosis can be made successfully using the ICD-O-3 morphology code. There are also language versions of the service to take account of Swedish and English users.

During 2019, a total of 32 967 clinical notifications were received, of which 13 066 were on paper, 8 871 via the online service and 11 030 from information systems electronically. A total of 13 463 treatment data notifications were received, of which 6 641 were as an online service and 6 822 from information systems. All pathology notifications were received by e-data transmission, in total about 335,800 separate diagnostic notifications.

Number of clinical notifications

The creation of the registry’s case aggregation has been carried out by preliminary automatic coding. During 2019, automated case processing has been implemented on the basis of structural information (especially Primary location, histological type, dates). The automatic coding has been applied to the following cancers: colorectal cancer, breast cancer prostate cancer, kidney cancer, meningioma, hepatocellular carcinoma, cervical cancer, endometrial cancer, thyroid cancer, melanoma, pancreatic cancer, basal-cell cancer and squamous-cell skin cancer. During 2019, with the help of registration experts, a systematic quality check of the data generated by automatic coding (random sampling) was carried out, in which the accuracy and quality of the data were found to be excellent.

Coded cancers


The Cancer Registry assists clinical, epidemiological and basic cancer research by providing ready (see Cancer registration above) material and guidance in conducting scientific research and analysis, and statistical analytics services to cancer researchers. It also offers basic calculations of cancer incidence, mortality and patient survival.

Guidance and advice on statistical and information requests were further developed by augmenting the instructions and forms on the website. Data transfers were handled by a statistical expert who, when necessary, consulted the responsible medical officer and other employees at the Cancer Registry.

In 2019, a total of 95 data disclosures were recorded in the data management system of the registry, of which 13 were internal projects. Tabular information was provided to authorities on specific request (seven times), experts and researchers (30 times) and the media (five times). There were 48 requests for statements associated with research permits of the National Institute for Health and Welfare (THL), the majority of which were submitted for decision in November and December.

The website of the Cancer Registry has a service price list, in which the free and paid information products and services of the registry are explained clearly.

The cancer statistics for 2017 were publicised in May 2019 and updated in November. Colorectal cancer was the second most common cancer, including among men, while lung cancer is becoming rarer in the male population. New features were added to the interactive cancer statistics based on feedback received. Now users can view the time series of incidence and mortality by age group and lifelong risk of cancer morbidity and mortality. The statistical output is based on aggregate table data.

Fresh information was published on the Cancer Registry’s statistical application on how the survival rates of patients with the most common cancers differ between the areas of responsibility of different university hospitals in 2014–2016. The largest observed differences in survival rates were in pancreatic cancer.

The Cancer 2017 report was published to complement the interactive cancer statistics. The report gives a simple overview of the cancer situation in Finland in 2017. Special emphasis was placed on reporting the prevalence of cancer, which is an important measure of the cancer burden in health care. In 2019, work started on revising the report so that the content and quality of the Cancer Registry’s data can be presented in greater detail.

Due to population ageing, 10% (approximately 3 500 cancers) of new cancers are diagnosed in people over 85 years of age. In 2019, a study was started to refine routine statistics for the oldest age groups — those aged 85 and older — to better describe the cancer burden of the population.

The statistics for 2017 concerning breast and cervical cancer screening were completed in May 2019. According to the statistics, there were large regional differences in participation in cancer screening. Women living in the greater Helsinki area were the most remiss in taking part in screening. Only half of the young women participated in cervical cancer screening. Low participation rates can increase health inequalities. In the future, the reasons for non-participation will be clarified, including with the help of socio-economic variables. The aim is also to influence the invitation procedures of municipalities.

In 2019, the online screening statistics tool was further developed to allow data to be viewed in tabular or graphic form or downloaded to the extent desired for further processing. The invitation service of the Mass Screening Registry handles the extraction of women invited for screening from the population register on behalf of the municipalities and submits name and address information electronically to the information systems of the screeners selected by the municipalities. In addition, women are also extracted for invitation for cervical cancer risk screening. In 2019, there was a nationwide transition to using electronic transfer for all materials.

By the end of 2019, the Mass Screening Registry invitation service covered approximately 90% of the target population for breast cancer screening and more than 70% of the target population for cervical cancer screening. In a selection conducted in early January, women belonging to the screening target population were linked to the municipality in which they lived at the turn of the year. Through the invitation service, the screening providers then received the names and addresses of women living in their districts. Supplementary extractions were made in March, May, and September 2019.

In 2019, personal identity codes extracted from the Population Information System of women who were to be invited for screening in 2019 continued to be submitted to screening service providers outside invitation service. The free of charge extraction was based on municipal data from the turn of the year.

Under the Government Decree on Screenings, the extraction for breast cancer screening applies to women aged 50, 52, 54, 56, 58, 60, 62, 64, 66 and 68. In the case of cervical cancer, the extraction concerns women aged 30, 35, 40, 45, 50, 55 and 60, and if necessary also women aged 25 and 65. The new practices ensure that the target population receives an invitation at the same age and intervals in the whole country.

The Cancer Registry’s webpages for screening operators are still being developed.


The Mass Screening Registry annually collects invitation and inspection data from about 30 screening operators. The information is obtained in electronic format. In all, about 270 000 women mainly aged 30–60 were invited for cervical cancer screening. About 370 000 women aged 50–69 were invited for breast cancer screening.

The focus of the registry’s data system overhaul shifted to the development of mass screening registers. At the start of the year, invitation data was introduced in accordance with the new data model. The conversion of the database was completed in August 2019 and data audits continued through the autumn. Quality assurance tools were also developed in the autumn, and the introduction of a new data model was piloted with two screening actors. Refinements were also made to the screening parameters and automation of data transfer was started.

In the autumn of 2019, the technology choices of the programming platform were completed and an application framework was built, on the basis of which the applications needed in operational activities can be introduced.

A process flow chart for cervical cancer screening was completed and integrated into the parameters. All municipalities and screening operators were informed of the timetable: from 2022, invitation and inspection data will only be accepted in the new data model format. At the same time, the IT experts of the screening operators were invited for free training, arranged for spring 2020.

The Act on the Secondary Use of Health and Social Data came into force in June 2019. In accordance with it, data from non-screening testing activities can in future be stored in screening registries. Previously, cervical cancer test data had been applied for from several dozen laboratories based on a research permit. In autumn 2019, extensive material was also received from the Finnish Student Health Service. In total, data from about 8.5 million external cervical cancer pap tests were collected in the registry during 2018–19. The collection of non-screening mammography data was started in the spring of 2019 on the basis of a research permit. By the turn of the year, data had been obtained from more than 300 000 non-screening mammographies.

A new colorectal cancer screening programme was launched in nine municipalities (Oulu, Orivesi, Jyväskylä, Muurame, Paimio, Sauvo, Säkylä, Tampere and Ylitornio) in April 2019. In spring 2019, all these municipalities worked in rotation together with the screening coordinator of Fimlab Oy, which acts as a screening laboratory. Municipalities were informed about the principles of colorectal cancer screening, its practical implementation and the submission of screening data. The first training package for screening examiners, organised by the Finnish Society of Gastroenterology, was completed and contact instruction was held in Helsinki in May 2019. A training package for screening nurses was planned for spring 2020.

The colorectal cancer screening information system and data transfer were developed in joint weekly meetings in autumn 2019. A flow chart and form templates to facilitate the re-cording work were completed. Data transfers began in June 2019, and preliminary results were presented, for instance the meeting of the Association of Nordic Cancer Registries in Sweden and at an international endoscopy conference in Barcelona.

By the end of the year, some 27 727 men and women had been invited for and had taken part in colorectal cancer screening. The participation level was about 79%. Just under 3% of the participants had been invited for further examinations and about 415 colonoscopies had been performed. In light of these figures, screening has got off to a good start. In future, monitoring will be intensified and the threshold values refined.

In late 2019, the Cancer Registry recontacted those who had previously taken part in colorectal cancer screening and a few other large municipalities and joint municipal authorities and offered the opportunity to take up intestinal cancer screening in 2020 too. Municipalities were also offered calculations of screening costs. By the end of 2019, Posio municipality had signed the agreement. A few other municipalities or joint municipal authorities also announced that they would start screening in 2020.

The five-year key project, which began in 2016, with a view to establishing nationwide cancer screening steering mechanisms in Finland, has progressed. The project also aims to secure a national-level evaluation for screening tests and related further studies and treatments. The National Steering Group for Cancer Screening was established at the turn of the year 2018–2019.

The participants in the group represented regional cancer centres (chaired by the Director of the Cancer Centre of Inner Finland), the Finnish Cancer Registry and the Ministry of Social Affairs and Health. The steering group met three times in 2019 after its founding meeting. In addition, an expert group on cervical cancer screening was established, the first task of which was to implement the recommendation sent to the Ministry of Social Affairs and Health in August to increase the target age for cervical cancer screening from 60 to 65 years of age. The working group developed recommendations for a new screening protocol and made a list of HPV tests suitable for screening. The working group’s recommendations will be published on the Cancer Registry and ministry websites in spring 2020.

The development goals for cancer screening were presented to MPs individually during autumn 2018 and spring 2019. Calculations on the impact and costs of expanding cervical and breast cancer screenings and initiating colorectal cancer screening were submitted to all parliamentary groups, the Ministry of Social Affairs and Health and the Ministry of Finance.

In autumn 2019, the Ministry of Social Affairs and Health announced that an annual allocation to municipalities for the start of a national programme for colorectal cancer screening in 2022 had been included in the government’s General Government’s Fiscal Plan.

Epidemiological and statistical research

The research work of the Cancer Registry focuses on identifying cancer risk factors in the population, assessing their effects and identifying opportunities for prevention. In addition, factors related to the early detection of cancer, methods of statistical and data analysis important for cancer epidemiology, and the prognoses of cancer patients are studied. The re-search activities of the Mass Screening Registry are related to the evaluation and reform of statutory screening and the study of new forms of screening at population level. The Cancer Registry’s data resources are widely used for collaborative work in research. References and recent publications can be found on the register’s website.

For the purposes of cancer statistics, Statistics Finland provides annually updated population according to socio-economic status and educational group, on the basis of which it is possible to tabulate cancer incidence, mortality, and survival rates in these population groups. The integration of this new data into the statistical production process continued in 2019 and, where applicable, will be transferred to an interactive statistical application in spring 2020.

The Cancer Registry continued the text mining project on electronic pathological reports. The pilot has focused on the reliable interpretation of Gleason scores from pathology reports so that the data can be used in statistics.

In the case of statistical methodological study, the Cancer Registry continued to develop the estimation of the population attributable fraction and the regional variation in survival rates. Computational statistical methods have increasingly been used in the statistical and research activities of the Cancer Registry. Improvements were made to the R statistical computing package (popEpi ) developed to enhance research activity.

A study conducted in collaboration with Helsinki University Hospital in 2019 showed that the average life expectancy of glioblastoma patients has increased thanks to new treatment practices. For patients aged 70 and over, however, the study showed only a minor increase.
Methods were developed in cooperation with external partners. A research project continued with the Department of Computer Science of the University of Helsinki on the application of machine learning in cancer coding. The Cancer Registry has also started a project with the University of Oulu to analyse the heritability of cancer through simultaneous evaluation of cancers, such as breast and ovarian cancer.

Epidemiological research projects of the Cancer Registry

The cohort study METCA (Prospective Meta Cohort for Cancer Burden), which was set up to evaluate the population attributable fraction (PAF) of cancer risk factors, has compiled a cohort of some 250 000 people to the Cancer Registry, based on populationlevel health surveys conducted by the National Institute for Health and Welfare. By utilising the registry and the population register, the Cancer Registry started to monitor cancer and mortality in the cohort. An article describing the project as a whole has been sent to a scientific journal for evaluation.

Young cancer patients: A study using unique follow-up data concerning young cancer patients and their close relatives (FAMCAN) found that over 98% of families did not have a similar cancer diagnosed in a close relative at a young age. The study also calculated the risk of the same cancer type in children and siblings of a cancer patient who became ill at a young age. For example, sisters of patients with breast cancer under the age of 41 had a 2% risk of developing breast cancer at a young age, compared with 0.6% for a Finnish woman selected at random. This means that, on average, one in 50 siblings is diagnosed with early breast cancer, compared to one in 180 in the population. Based on the published information, it is possible to inform about, for example, the corresponding cancer risk among the siblings of a young adult cancer patient, for instance when considering genetic factors.

A doctoral dissertation on fertility treatments and obstetric effects in women with cancer as a child or young adult (0–40 years) was completed in spring 2019.

An international peer-reviewed study investigated the presence of socioeconomic inequalities in colorectal cancer risk. The study found a rapid increase in the incidence of intestinal cancer among men with elementary education. The incidence increased from 16.7 cases per 100 000 men in 1976–1979 to 31.8 cases per 100 000 men in 2010–2014. Differences in the incidence of colorectal cancer between education groups levelled off in men as a result. This highlights the importance of lifestyle changes in the differences of colorectal cancer incidence between socio-economic groups.
Research work on the treatment path of a cancer patient prior to diagnosis has progressed and the first paper has been completed for publication in 2019.

The Cancer Registry, together with the University of Helsinki and the University of Tampere, continues to participate in the activities of the Centre of Excellence in Tumour Genetics research consortium funded by the Academy of Finland (CoETG).

Screening evaluation projects in Finland

Breast cancer screening

In 2019, a doctoral dissertation was completed on the chest symptoms found in connection with screening and their link to e.g. screening and intermediate cancers, as well as to breast cancer and total mortality rate. The results show that the preventive effect on mortality in patients with chest symptoms is not as good as in the asymptomatic population. If a symptom appears during screening, screening practices should be reviewed, for example, by adding further examinations or by reviewing the screening interval. Overall, there are not many symptomatic women in the screenings, only a few percent of those who participated.

According to a study completed at the Mass Screening Registry in 2019, the average cost of diagnosing and treating a breast cancer patient in a ten-year follow-up was €28 700. The younger the patient and the more advanced the breast cancer, the higher the cost. The results are in line with the findings of longitudinal studies published elsewhere in Europe. An international comparative article on breast carcinomas detected in screening was also published in 2019. According to the study, overdiagnosis occurs especially in grade 1 or 2 tumours.

Cervical cancer screening.

In 2019, a paper compared regional differences in the lifetime probability of deviation in screening results. The probability of at least once in a lifetime averaged 34%, and the range per university central hospital catchment area was 20–40%. In Helsinki, where 25 and 65-year-olds are also screened, the probability was as high as 54%. The numbers are high relative to the corresponding probability of cervical cancer or its precursor. The higher figure in Helsinki than in the rest of the country is largely due to 25-year-olds being invited for screening.

A Cancer Registry representative was also on the working group set up by the National Institute for Health and Welfare that recommended the inclusion of boys in the HPV vaccine programme.

PSA screening test for prostate cancer

The previous Finnish Randomised Study of Screening for Prostate Cancer (FinRSPC) covers the follow-up of about 80 000 men over a 20-year period. In 2019, it was found that population-based PSA screening was not cost-effective measured against overall mortality. There was a small decrease in cost when considering only prostate cancer deaths, but prostate cancer patients in the screening group, on the other hand, had slightly more deaths from causes other than prostate cancer, and this offset the cost differences.

Special issue of Duodecim journal on cancer screening

This was published in autumn 2019. Cancer Registry researchers were involved in the preparation of the editorial and five analytical articles. The articles, aimed at the medical profession, dealt with the current state and development needs of cancer screening; evaluation methods and what advantages and disadvantages should be taken into account; dimensions of social inequality in cancer screening; the optimal start and cut-off age of the cervical cancer screening programme and the development of screening programme methods; and a renewed colorectal cancer screening program.

International joint projects

The EU-TOPIA (Towards Improved Screening for Breast, Cervical and Colorectal Cancer in All of Europe) research project funded by the EU Horizon 2020 programme got underway at the Mass Screening Registry. In 2019, comparisons based on simulation models were published on the lifetime effects of screening for three types of cancer (lung, breast, and colorectal cancers) on disease-specific and overall mortality. For example, the mortality-reducing effect of breast cancer screening on 50-69-year-olds among those who participated in screening is at its highest about 25 years after the start of screening. For a total of 1,000 women who underwent breast cancer screening, screening was estimated to avoid seven breast cancer deaths and, on average, to achieve about 13 additional years of life with one avoided breast cancer death. The project also published a proposal, based on the international Delphi panel method, on key indicators for monitoring and effectiveness in cancer screening.

A project on the implementation of cancer screening in EU countries published a peer-reviewed study on the main screening results for colorectal cancer screening. In total, colorectal cancer screenings were designed, piloted or implemented as a routine programme in 20 EU member states. Participation rates and the rate of detection were somewhat higher in programmes using the faecal immunochemical test (FIT) than in programmes using the guaiac-based faecal occult blood test (gFOBT).

Finland participated in the EU-wide collaborative project on cancer control programmes of the Innovative Partnership for Action Against Cancer (iPAAC). In December, an international meeting on cancer screening was held in Helsinki as part of the side events of Finland’s EU Presidency.

A study on productivity losses caused by cancer in Russia was published in cooperation be-tween the Mass Control Register, the University of Tampere and the Prof. N.N.Petrov Research Institute of Oncology. In 2019, a review of the validity of cancer registries was also underway in all regional cancer registries in Northwest Russia in cooperation with the Inter-national Agency for Research on Cancer (IARC) under the auspices of the WHO.

In 2019, a project to develop a common Nordic screening statistics reporting system (Nord-Screen) was being carried out with the support of the Nordic Cancer Union. Finland is over-seeing the project, which has published web-based statistics and an article on temporal coverage comparisons and trends of tests in the Nordic countries.

In 2019, the results of a 16-year follow-up of a European collaborative study of randomised PSA screening studies were also published. Prostate cancer mortality was found to be reduced by approximately 20% in the screening group, corresponding to a difference of approximately 0.2% in the likelihood of prostate cancer mortality between study groups. The incidence of prostate cancer was 36% higher in the screening group.

The Cancer Registry is involved in the research project CONCORD-3, which compares global survival rates for cancer patients.

The Cancer Registry is also involved in the European research community on cancer patient prognosis, EUROCARE6, a main focus of which is on rare cancers.

The Cancer Registry coordinates the Nordic Occupational Cancer Study (NOCCA), which explores associations between work-related factors and cancer risk in the Nordic countries. The project has produced numerous publications related to the profession and cancer also in 2019, and a doctoral dissertation on the profession and kidney cancer was completed from the material.

The Nordic cooperation study on the late socio-economic effects of childhood cancer patients continued in the year between research groups in Denmark, Finland and Sweden under the no-cost extension agreement. There have been greater challenges than expected in compiling the data, especially in Denmark and Sweden, and in sharing them. However, Finnish researchers have used their own material in a total of three publications — two focused on the prognoses of paediatric patients (socioeconomic groups and foreign backgrounds) and one on violent deaths in children with cancer.