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The Finnish Cancer Registry is a good example of how a small national project can develop into a world-class research institution if it is trusted and managed with determination. When the CSF, concerned about the poor cancer situation in the country, decided in the autumn of 1952, on a proposal from Arno Saxén, to allocate funds for the collection of cancer data, hardly anyone could have foreseen what this decision would lead to. The struggle against cancer was largely based on the activists of the CSF and the Cancer Foundation and the public collections they organised, and the initial aim was simply to collect data on the country’s cancer situation for a few years.

The situation changed, however, when the National Board of Health and the Central Office of Statistics began to support the data collection work, and Erkki Saxén was appointed to head it. Sakari Mustakallio’s statistical work, which had begun in the 1930s, and the latest cancer data from the US, led him to design a questionnaire that provided key information about a patient’s cancer. As a necessary authority, the National Board of Health forwarded otherwise confidential cancer data sent by doctors and hospitals to the Cancer Registry, and the Central Office of Statistics provided information on cases where cancer was mentioned on death certificates. When the Finnish medical community understood the importance of cancer statistics, the collection achieved such good results that the Cancer Society decided to continue its activities in 1957. This positive decision was supported in particular by Atle M. Mali, Head of the General Department of the Finnish Medical Council, and Niilo Voipio, the Cancer Society’s agent, who contributed in many ways to the development of the Cancer Registry.

The solution led to the creation of a database containing, since 1953, data on cancers diagnosed in Finland in different parts of the country and among different population groups. This registry, which is almost unique in the world, has created good conditions for research and has provided politicians and authorities with a knowledge base for national cancer policy and the CSF with material for more effective awareness-raising, information and education activities.

In addition to organising the collection of cancer data, Erkki Saxén established close contacts with key foreign cancer researchers and international cancer organisations. This provided Finland with the latest information on cancer registration and research and demonstrated the high quality of Finnish cancer research. The tactic proved its effectiveness at the turn of the 1960s, when the Cancer Registry was invited to participate in two international research projects: the National Institutes of Health (NIH) Cancer Survival Study and the World Health Organization (WHO) Norway-Finland Lung Cancer Study.

These large-scale studies in the early 1960s created the conditions for the Cancer Registry’s research work to intensify, but also helped to strengthen its role in domestic public health work. When the CSF decided to launch nationwide screening for cervical cancer, Saxén was instrumental in the establishment of the Mass Screening Registry, set up in 1967 to monitor the quality and effectiveness of screening, as part of the Cancer Registry. Finland was the first country in the world to establish such a registry. Under the leadership of Matti Hakama, who was appointed director of the Mass Screening Registry, Finland became a pioneering country in cancer screening. Cervical cancer screening, which started in 1963, became nationwide in 1972, breast cancer screening in Finland became the first country in the world in 1987 and colorectal cancer in 2022.

According to Saxén, only research could ensure that the Cancer Registry data was collected and used correctly, provide new information on the genesis and biology of different cancers, and create programmes for early detection of cancers. During the 1960s, the use of registry data for research increased rapidly, and cancer organisations increased their funding, especially for research into the harm caused by tobacco. At the same time, the research orientation of the Cancer Registry changed. While previously the main inspiration came from Denmark, the US became the new role model for research.

In 1972, the name of the Cancer Registry was added to the Cancer Statistical and Epidemiological Institute and its staff was considerably strengthened. Within a few years, Saxén was joined by Matti Hakama and three other researchers, Lyly Tepo, Timo Hakulinen and Eero Pukkala. The team thus formed, consisting of five people from medicine, statistics and computer science, showed that multidisciplinary cooperation can produce good results when everyone is working towards the same goal, in this case to find out what causes cancer and how to prevent it. Members of the group led the Cancer Registry until 2010, when Nea Malila, the first female director of the registry, took over. The strength of the Cancer Registry has always been its professional staff, who long have enjoyed their work.

The Cancer Registry quickly developed into a major research institute, whose research is widely published in major international scientific journals and frequently cited. The best known of the registry’s studies are the survival studies carried out by Timo Hakulinen and his colleagues and the occupational exposure studies and cancer maps produced by Eero Pukkala and his partners. Matti Hakama and his team pioneered screening studies worldwide. From the outset, the Cancer Registry worked closely with both domestic and foreign partners on research.

The work of the Cancer Registry has extended to many areas of health care. In addition to administration and research, it has served health education and training. Representatives of the registry have made frequent presentations at various cancer training courses and educational events and meetings, both at home and abroad, and have participated in the training of health care personnel and researchers. Registry leaders have trained researchers at universities in Finland and other countries, and have also provided training for students in developing countries up to doctoral level.

The Cancer Registry was founded on the view that an effective fight against cancer cannot be achieved by national efforts alone; it requires international collaboration. Initially a recipient party, the Cancer Registry quickly rose to become one of the world’s leading cancer registries and began to contribute to the global effort to fight cancer. The conditions for this rise were created by Finland’s good nationwide demographic data system, high standards of cancer diagnostics and a good personal identification system, but it would not have been possible without the Cancer Registry’s comprehensive cancer database, skilled management and motivated and scientifically high quality staff. This international standing is reflected in the many prominent positions held by Cancer Registry researchers in the international cancer research community.

The Cancer Registry has always been linked to the CSF. This has meant that it has not been directly affected by the repeated restructuring measures of the government, but has been largely dependent on the support provided by the CSF. The registry first received public funding from the RAY in 1961, and the RAY soon became its main sponsor for decades, gradually covering about half, and in some years even two-thirds, of its costs.

After the RAY funding ended, the CSF signed a contract with the THL in 2010 for the maintenance of the Cancer Registry, and the following year, a budget was included in the state budget for the technical maintenance of the registry and the national screening registers. Still, more than half of its funding came from the CSF, private donors and research contracts.

The Cancer Registry is a good illustration of how an institution that is largely privately funded can serve society beyond its own purposes, combining flexibility with efficiency and economy. However, it has all depended on the donations of private individuals and companies that have enabled the Cancer Registry to be funded by CSF.