The Finnish Cancer Registry, the CSF's own research institute, focuses on statistical and epidemiological population-level research on cancer and the development of national cancer screening. The CSF maintains national health care registers of individuals related to cancer and cancer screening, collectively called the national cancer registry The operation of the cancer registry is regulated by law and the National Institute for Health and Welfare (THL) is responsible for its maintenance. The THL, as the controller of the cancer registry, has given the CSF responsibility for the technical maintenance of the registry and allocates an appropriation from the state budget as a state subsidy to the CSF. The Cancer Foundation mainly finances research activities and the upkeep of the operating environment of the Finnish Cancer Registry. The Cancer Society has an Information Security Officer, an Information Security Manager and an Information Security Working Group. Staff are continuously trained in data handling and general security guidelines. The Cancer Registry website has been made accessible and published in Finnish, Swedish and English. The aim of the Cancer Registry’s communication is to raise awareness of the institution and to reach the groups for whom the Cancer Registry has useful information to offer. The Cancer Registry provides researched population-level information on cancer incidence and cancer screening in Finland. At the CSF information security is the responsibility of the chief data security officer, the data security manager and the data security working group. CSF staff regularly receive training in the handling of data and guidance on general data security matters. The Cancer Registry’s webpages became available during 2019, published in Finnish, Swedish and English (https://cancerregistry.fi/). The purpose of the Cancer Registry’s communication 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 The completeness, accuracy and long time series of the data provide a basis for planning health care resources and enable reliable projections to be made and outcomes to be monitored in future years. The five-year cancer projections by special responsibility area support the monitoring of cancer outcomes. New cancers are compiled into a national database using individual reports from a variety of sources. The data is used to compile a case summary for statistical and research purposes. Statistical causes of death are updated annually, as are socio-economic status, occupation and education data. The time of death and information on 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 or as files retrieved from information systems. The paper-based cancer notification system ceased at the end of 2020. Close cooperation with all university hospitals continued in 2020. The aim is to move towards a minimally invasive clinical declaration, involving the receipt of a diagnostic summary from the treatment provider at the point where cancer diagnosis is confirmed an decision on treatment made. The move to structured registration and uniform data definitions will support the development of single-entry cancer reporting. Further efforts were made to communicate the new data models and the quality of data content to data providers. The goal of integrating cancer data from the Apotti patient data system into the cancer reporting process was not achieved as hoped. The integration of cancer data into the Apotti care notification data generated hundreds of thousands of notification items with the same data. The design and implementation of the new data structure with Apotti and THL was delayed due to a lack of resources and the Covid-19 situation. About 600 haematological and prostate cancer notifications were extracted from the dataset. For the statistical year 2018 (published 4/2020), clinical cancer report is missing in about 60% of cases, but there are large differences between diagnoses. For the 2019 statistical year, there is a slight increase in the number of clinical cancer notifications. The pathology morphology code maintained by the Cancer Registry was published on the THL code server in 12/2020, based on the revised 2nd version of the WHO ICD-O-3 cancer classification and the WHO disease-specific “blue book” classifications. The new code replaced the old code on the server. The Cancer Registry also maintains data templates on the code server for cancer notifications and the topographic classification of cancer sites. The submission of cancer notifications was supported by updating the web-based cancer notification form application www.syöpäilmoitus.fi and data collection support pages, providing telephone advice, and holding training and expert meetings with data providers. The Cancer Registry physician in charge participated in the planning of the implementation of the national SNOMED-CT coding system and Cancer Registry experts participated in the planning of the national prostate cancer quality registry. In 2020, 24 533 clinical cancer notifications were received, of which 2 323 were received in paper form, 8 995 via the online service and 13 215 as data system entries. A total of 9 685 treatment data notifications were received, of which 7 928 (82%) were received online and 1 757 from information systems. All pathology notifications were received as e-data transmission, for a total of 225 173 separate diagnoses. A total of 16 581 death notifications, mainly for 2019, were received from Statistics Finland and processed in the Cancer Registry. Of these, cancer was the statistical underlying cause of death of the patient in 12 915 cases. The creation of the registry’s case aggregation has been carried out by preliminary automatic coding. The following primary location cancers could be automatically coded: colorectal, breast, prostate, kidney, meningiomas, hepatocellular carcinoma of the liver, cervix, endometrium, thyroid, skin melanoma, pancreas, skin basal cell carcinoma and squamous cell carcinoma. A systematic quality check is performed for automatically compiled cancer cases. The accuracy and quality of the data was found to be excellent. To assess the immediate and long-term effects of the Covid-19 pandemic containment measures, the Cancer Registry started systematic monitoring of the numbers of cancer samples reported by pathology laboratories. The review of the cancer burden will continue in terms of diagnoses and mortality. Registration of screening data The comprehensive collection of screening data will allow the quality of screening activities to be assessed from referral to treatment. Time series will be used to examine the impact of screening on cancer incidence and mortality. Data on all cancer screening will be collected for the whole screening chain. In addition to invitation and test data, those with suspected cancer will be followed up for further investigations and specialist care to identify any screening cancers. This information is obtained from screening providers. Data on those invited for screening over the course of the year are obtained from the THL demographic data, name and address data accompanying the invitation from the Digital and Population Data Services Agency and other invitation data from the screening providers. All information is provided electronically via a secure and encrypted network connection. Each year, municipalities invite to breast and cervical cancer screenings the age groups defined in the national screening regulation. In 2020, 275,000 women aged mainly between 30 and 60 were invited for cervical cancer screening, with a large proportion of women aged 25 and 65 in the Greater Helsinki area. 365 000 women aged 50-69 were invited for breast cancer screening. About In total, data from about 8.5 million external cervical cancer pap tests were collected and some 300,000 tests outside breast cancer screening. In 2020, the total number of registered non-screening breast cancer tests rose to 1.3 million. Colorectal cancer screening The pilot for colorectal cancer screening was extended to three new municipalities that had started screening on a voluntary basis, with a total of around 30 000 men and women aged 60-66 invited for screening in 12 municipalities. In order to promote colorectal cancer screening, cooperation was established with the CSF Communications Unit, municipalities and the screening laboratory. Based on data from the first year of screening, test sensitivity levels were calculated because the proportion of people referred for follow-up had been lower than estimated. All municipalities involved in the screening were sent information on its results and encouraged to continue. Several new municipalities and local authorities were approached to increase the target population for screening. All nine municipalities decided to continue and three new municipalities joined. Services The Cancer Registry assists clinical, epidemiological and other cancer research by providing data, guidance in conducting scientific research and analysis, and guidance in the selection of the right research design. The registry’s services include basic calculations of cancer incidence, mortality and, in some cases, prognosis (patient survival). Identifying, planning, initiating and evaluating the conditions for cancer screening are the core tasks of the Cancer Registry. The aim of screening is cancer prevention and early detection to reduce cancer mortality. Guidance and advice on statistical and data 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 2020, a total of 79 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 (nine times), and experts and researchers (57 times). During the spring, fewer requests were received than in previous years as Findata launched its data licensing activities. 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. Interactive cancer statistics for the 2018 statistical year were published in May and updated in November 2020. The statistical output is based on tabulated aggregate level data. The preliminary statistics for 2019 could be published for the first time in October 2020 thanks to accelerated and partly automated case processing. The Cancer 2018 report summarises the current cancer situation in Finland in straightforward figures and statistics. A new data product involved the description of the cancer burden according to educational level. Overall, the highest number of new cancers and cancer deaths were found among people with only primary level education and the lowest among those with tertiary education. The difference in incidence was small, but the difference in cancer mortality was more marked. For lung cancer in particular, the difference in incidence and mortality between primary and tertiary education was more pronounced. Interpretations of long time series of incidence, mortality and survival were increased. The 2018 breast and cervical cancer screening statistics were published in the spring. In addition to the statistics, annual reviews of screening were produced, examining the impact of regional and socioeconomic factors on screening uptake and outcomes, among other things. Participation in screening was lower than in the rest of the population among groups not in employment, with the lowest level of education and with a non-native language as their mother tongue. There were also differences in detection rates between regions and population groups. The invitation service provides guidance and services to municipalities, including on improving invitation practices. The invitation service is responsible for extracting the women to be invited for screening from the population register on behalf of municipalities and transmitting the data electronically to the information systems of the screeners chosen by the municipalities. The use of the THL population information system was continued. The aim was to provide real-time and rapid data transmission throughout the country. The centralised invitation service will enable municipalities to be instructed to organise follow-up invitations with address updates. For the second time, the 2019-20 year-end invitations were carried out according to a revised model. The data of the invitees to be screened was sent to the screeners either without name and address information or as an invitation service file with names and addresses in four standard batches. Cervical cancer screening risk stratification based on the screening result was also conducted at the end of the year. About 60% of municipalities were covered by the invitation service for cervical cancer screening and over 90% for breast cancer screening, about 40% and almost 100% of the target population respectively. As of October, an on-call service agreement was also concluded for cervical cancer screening in the Hospital District of Helsinki and Uusimaa, which resulted in 40 new municipalities joining the invitation service. Database reform The Cancer Registry’s technical and operational renewal project continued. The development work focused on the screening registers, whose technical and operational modernisation continued with a particular focus on the integrity of data collection and data delivery for cervical and colorectal cancer screening. The cornerstone of this development was the update of the screening data model. The new model provides a common, standardised and highly automated data collection platform for all screenings. The production use of the new model and parameters were phased in for colorectal and cervical cancer screening. For colorectal cancer screening, data were submitted to the registry in several steps, both in “raw” format and in xml format based on the new data model. A similar interaction took place with all data providers for cervical cancer screening. The centralisation of the registration of tests outside screening programmes and related follow-up data and data collection continued, both of which were anticipated in the development phase of the new data model. IT training on the data model and on cervical cancer screening parameters, process and xml data submission was provided in March and remotely in December. The corresponding structures for breast cancer screening were finalised in internal meetings of the registry, with IT training for external actors scheduled for autumn 2021. The registry developed an internal quality assurance system, including a monitoring view at the municipal and screener level that enabled viewing the screening chain data at the individual level and to edit the most relevant data fields for statistical purposes. A web-based application for screeners to report municipal decisions and age group extractions of their choice will be needed in the future. This would provide information on the benefits, harm and costs of screening at national and regional level. A four-year project plan for the service concept was completed. Social advocacy The National Steering Group for Cancer Screening oversees the initiation, implementation and development of cancer screening. The group includes representatives from the Finnish Cancer Registry, regional cancer centres and the MSAH. The national screening protocols and lists of acceptable primary tests for cervical cancer screening were published on the Cancer Registry’s website by the steering group’s expert group on cervical cancer screening. The material was also sent to all screening laboratories. In August, the steering group published a position paper to the government and Parliament, stressing the need to launch nationwide screening for colorectal cancer within the timeframe of the General Government Fiscal Plan. On the basis of the expert submission, it was decided that PSA prostate cancer screening proposed by 141 members of parliament should not be launched in Finland. At the end of the year, the group prepared a decree amendment that would allow the extension of cervical cancer screening to women aged 65 and the launch of nationwide colorectal cancer screening in 2022. An information campaign with the media and screening operators on the impact of the Covid-19 pandemic on screening activities was carried out in cooperation with the Communications Unit. Four mapping exercises were conducted on the pandemic’s impact of screening. They showed that the pandemic reduced services in spring 2020, with the suspension of screening in several municipalities. Participation in screening was also lower in the spring than in the past. Participation returned to normal in the autumn, but some activities, such as HPV screening, were still slow in some municipalities in October. Guidance was sent to screening laboratories on activities during and information that the 2020 screening year could be extended to summer 2021. 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. Screening research activities are related to the evaluation and reform of statutory screening and the study of new screening modalities at population level. Also, the data resources of the Cancer Registry are used extensively for collaborative research. References and recent publications can be found on the Cancer Registry website. The text mining project on electronic pathology reports continued. The piloted Gleason scoring method for scientific interpretation of the textual content of pathology reports is currently under peer review. The statistical methodology project continued to develop the estimation of population size distribution and the calculation of regional variation in cancer survival rates. Computational statistics methods have been increasingly used in the statistical and research activities of the Registry. The R software package (popEpi) ,developed to enhance research activities, was improved. The effects of ageing on cancer burden was studied (Am J Epid, 2020). Population ageing has led to a sharp increase in new cancer cases in the more advanced age groups. The study found that cancers diagnosed in people aged 85 and over already account for about 10% of all new cancers in Finland. In 2018, more than 33,000 new cancers were diagnosed in Finland, of which 3,200 were in people aged 85 and over. Around a fifth of the elderly population has or has had cancer. Statistical methods for data analytics were developed in collaboration with external parties. A research project on the application of machine learning to cancer coding was continued with the Department of Computer Science at the University of Helsinki. Epidemiological research projects of the Cancer Registry The cohort study METCA (Prospective Meta Cohort for Cancer Burden) of the Finnish Cancer Registry and THL, which combines several Finnish population health surveys, provides unique, up-to-date information on cancer risk factors and their impact on the cancer burden among Finns. The project published a study that confirmed the high significance of smoking as a single risk factor for lung cancer and the link between obesity with the risk of colorectal cancer (Pitkäniemi et al. Acta Oncol., 2020). Men who smoked were 27 times more likely to develop lung cancer compared to men who never smoked. Similarly, the risk increased 13-fold in women who smoked. Obesity (body mass index over 30) increased the risk of colorectal cancer by 1.4 times in both women and men compared with those of normal weight. A study using unique follow-up data concerning young cancer patients and their close relatives (FAMCAN) found an increased risk of head and neck cancers, as well as an increased risk of testicular cancer in recent years. The relative risk of testicular cancer was clearly elevated in the brothers of young patients, which is worth noting in the follow-up of brothers of young testicular cancer patients. In head and neck cancers, on the other hand, the risk to a sibling by the age of 60 was only 0.5%. For the first time, regional variation in patient survival was estimated at the municipality level for 11 of the most common cancers (Seppä et al. 2020). The regional variations in patient survival narrowed for cancers of the uterus, ovary and prostate, and were the greatest for cancers of the stomach, prostate, kidney and liver, and melanoma. In addition, there was significant variation between hospital districts in men for prostate cancer, melanoma and kidney cancer, and in both sexes for pancreatic cancer. For glioblastoma, the impact of the number of patients in a university hospital on survival was examined (Raj et al. 2020). Kuopio, Oulu and Turku University Hospitals were defined as hospitals with a low patient volume. The median survival time for patients in these hospitals was slightly shorter than for patients in Helsinki and Tampere University Hospitals. There were large differences in the incidence of glioblastoma between regions. The impact of education on survival was studied for colorectal cancer (Finke et al. 2021). Survival rates were lowest in patients with only primary school education. The differences were not explained by regional variation. A small proportion of the differences were explained by whether the cancer had spread at diagnosis. It was also shown that the education data linked to the patient cannot be replaced by education data aggregated to the municipality level. 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 The Cancer Registry evaluates and studies the development of screening and the performance and effectiveness of different screening methods. The data is used to investigate the sensitivity, accuracy, benefit and harm of screening and the impact of screening on the need for health care resources. A nationwide, randomly sampled postal survey will be used to investigate the welfare effects of screening. Data from the screening registers were used in several population-based health care studies. Cervical cancer screening data and collected non-screening test data were used to examine national coverage and socio-economic differences in testing. Of those invited to the screening programme, 70% participate in screening and, taking into account non-screening tests, the five-year coverage of tests is 86%. To reduce the incidence and mortality of cervical cancer, the most important thing would be to improve participation rates, especially among women from poorer socio-economic backgrounds. Questionnaires were used to examine the impact of screening on lifestyle and quality of life and the reasons why young women are referred for non-screening cervical cancer testing. Registry data was used to investigate the impact of extending the breast cancer screening invitation window on cancer incidence, the screening process and breast cancer mortality, and to examine the cost-effectiveness of screening activity. The evaluation of the national randomised screening programme for colorectal cancer continued. The pilot phase of the colorectal cancer screening programme launched in 2019 was evaluated by monitoring and publishing data on screening uptake, referral rates and screening findings. Participation rates for colorectal cancer screening were excellent, at 83% for women and 75% for men. Monitoring and evaluation of the Finnish sub-sample of the randomised European prostate cancer screening trial will continue with registry data to examine long-term effects, cost-effectiveness and the impact of screening on quality of life. A follow-up study on the quality of life of prostate cancer patients was published. No significant, systematic differences in the quality of life of men with prostate cancer were found between the screening and control arms during the 5-15 years of long-term follow-up. International joint projects In 2020, a joint Nordic study on cancer incidence, mortality and screening participation among migrant women, led by Finland and funded by the Nordic Cancer Union, was launched. A plan to structure and analyse the data was developed in Finland. Our own data was systematically reviewed and distributions were sent to Sweden, Denmark, Norway and Iceland. The EU-TOPIA research project (Towards Improved Screening for Breast, Cervical and Colorectal Cancer in All of Europe), funded by the EU Horizon 2020 programme, published, among other things, three reviews of the impact of cervical, breast and colorectal cancer screening on disease-specific mortality in Europe. Finland participated in the EU-wide collaborative project on cancer control programmes of the Innovative Partnership for Action Against Cancer (iPAAC). An international meeting on cancer screening was held in Helsinki as part of the side events of Finland’s EU Presidency in late 2019. The project to develop a web-based reporting system for joint Nordic screening statistics (NordScreen) was continued under the coordination of the registry with the support of the Nordic Cancer Union. The project resulted in the publication of web-based statistics and the completion of a comparative study on the results of primary screening tests for cytological and HPV screening in the Nordic countries. A joint Nordic survey reviewed the recommendations in several international publications on the organisation of cervical cancer screening programmes and assessed the extent to which these recommendations are followed in the different Nordic countries. For Finland, the main shortcomings in the organisation of the screening programme, apart from the decentralised responsibility for organisation, are mainly related to data registration. Tests outside the screening programme are not routinely registered in the Cancer Registry, which makes it difficult to assess the quality of screening. Furthermore, the screening history of cancer cases is not routinely checked, unlike in Denmark, Norway and Sweden. The Cancer Registry is involved in the research project CONCORD-3, which compares global survival rates for cancer patients. In addition, we are involved in the European research community on the prognosis of cancer patients, EUROCARE6, which focuses on rare cancers. The joint Nordic project NOCCA (Nordic Occupational Cancer Study), coordinated by the Cancer Registry, has published several occupational and cancer-related papers. These studies found, among other things, an increased risk of lung and lip cancer in fishermen and sailors. Seafarers were also found to have higher rates of mesothelioma than the general population, which is thought to be related to asbestos exposure at work (Petersen et al. Scand J Work Environ Health, 2020). Another study investigated the connection between occupational noise exposure and vestibular schwannoma (acoustic neuroma). Noise was found not to affect the risk of these benign tumours (Aarhus et al. Am J Epid, 2020). The Cancer Registry participated in the NCU-funded research project Cancer and COVID-19 (Cancer and Covid-19) of the Nordic cancer registries. Nordic collaborative research on socioeconomic late effects of childhood cancer patients continued between research teams from Denmark, Finland and Sweden.