The Cancer Registry monitors, evaluates and serves 

Key points

• Registering cancer cases and national cancer screening is required by law. Healthcare professionals should notify the Cancer Registry of all knowledge of cancer cases or their strong suspicion. Breast and cervical cancer screening information must also be reported.
• The Cancer Registry provides information for epidemiological, clinical and cancer biology studies. In addition, its employees help researchers in analysis and research, and provide guidance in the choice of study design.
• The Cancer Registry also performs research of its own.

The Finnish Cancer Registry is a statistical and epidemiological research institution maintained by the Finnish Cancer Society. Under the National Institute for Health and Welfare, the Cancer Society of Finland maintains a national register on incident cancers and also on breast and cervical cancer screening.

A register for cancer cases

Registration of cancer cases is required by law. Healthcare professionals must notify all knowledge of cancer cases or their strong suspicion to the national register without delay

_{Figure 1. Data flow and processing in the Finnish Cancer Registry.}

Pathology laboratories perform histological diagnostics of cancer, and laboratories submit details of all cancer cases electronically to the register. Doctors and other professionals may submit paper notifications that combine the most important information about the detection period. In February 2016 an electronic on-line form with which it is possible to submit notifications of the cancer detection period was introduced. Information related to treatment and monitoring can also be reported electronically during the year 2016.

In the Cancer Registry, all notifications are checked, their possible shortcomings and errors are asked to be supplemented or corrected, and papers are archived. Once a year, the registry information will be updated with the information of cause of death from Statistics Finland. A person’s place of residence at the beginning of the year of the cancer diagnosis will be updated with information from the Population Register Centre.

_{Table 1. Clinical and laboratory notifications received in the Finnish Cancer Registry in 2014 and 2015. Of those registered, 20 066 individuals received a cause of death notification and 1 167 new cancer cases were suspected based on data from death certificates. In all, 1 488 new cases were recorded after updating the cause of death data, some new second cancers and some new first primary cases of cancer.}

Based on notifications stored in the registry’s database, as well as notifications from a number of different sources, a summary on each cancer case is produced, and these can be used for statistics and research.  Also, new notifications of earlier cancer patients are processed in case new cancers would be found. About 10% of cancer patients fall ill with more than one cancer.

The challenge is that clinical cancer diagnosis notifications made by the doctor or medical staff are often left unreported. Due to lack of notifications, the data on stage and early stage treatment is often left unregistered. To fix this situation the Cancer Registry ended up splitting the notification into three parts: notification of the diagnostic phase, notification of the treatment information and notification of the follow-up phase.

The new on-line form helps small units which do not have the resources to develop their own electronic form and include variables collected in the register in their own systems. In particular, filling out a form at the diagnostic phase is important, because getting information on the diagnostic phase of the cancer to the registry ensures the correct cancer diagnosis and data on spreading of cancer, and tells about the planned treatment path.

In 2015, the Registry’s information on treatment of malignant hematological diseases  (myelodysplasia and myeloproliferative stages) was used to revise the completeness and correctness of the information. In almost 50% of these cases–which current knowledge classifies as cancers–the case information was missing. Notifications regarding hematological cancers has been particularly insufficient already in the past.

In 2007-2013, Cancer Registry had data of 47% of these malignant hematological changes. [1] Almost a quarter of these cancer cases entered in the registry are based, however, only on the information gathered from the death certificate, i.e. they lacked the clinical notification from the treating physician. Some of the information in the hospital discharge register, in turn, can be of preliminary diagnosis, so the Cancer Registry is presumably missing slightly less cases of cancer than the above result suggests.

_{Figure 2. Standardized (age-adjusted) incidence ratio (SIR) and mortality ratio (SMR) of all registered cancer cases in Finland in 2009-2013 by sex and hospital district. The estimate for Helsinki is shown with a circle.}

Screening information

It is the responsibility of Finnish municipalities to provide their residents with cervical and breast cancer screenings. The municipalities are obligated by law to carry out this duty by the Health Care Act and the government’s bylaw on screenings. Screening registers performing as part of the Cancer Registry support evaluation and statistics of screening programs, as well as research. Co-operation with municipalities and screening providers is active and guidance will be further developed.

Screening data are collected each year from about twenty service providers  screening for cervical and breast cancer. Information is checked, corrected, and its quality is ensured before the annual statistics can be accepted.

All data on screening will be received in electronic format from 2016 onwards. The amount of data input work decreased significantly in the last ten years, since instructions were given on submitting information electronically as early as 2004 [2]. National and regional statistics from cancer screenings in Finland are produced annually.

In addition, the Registry also studies new screenings, such as screening for bowel and prostate cancer, and the methodological development of established screening forms, for example through improving participation activity and new screening techniques (see: Cancer screenings).

The cancer burden

The Finnish Cancer Registry monitors the number of new cases of cancer and the burden of the development of the disease, cancer risk factors and mortality caused by cancer, survival, cancer prevention and early diagnosis. In addition, it provides prediction of the future cancer burden.

Epidemiological research aims to find the major directions for aiming research. Clinical research is an essential part of modern cancer treatment and follow-up. Cell level research is needed, in turn, for determining biological mechanisms.

More and more people are cured from cancer. Thus one challenge for the future is ensuring the quality of life of cancer survivors. It is important to find out what kind of damage cancer treatments cause and how they can be prevented and treated.

The incidence of cancer has increased significantly in Finland since the 1950s. Part of the increase can be explained by shortcomings in registration during the early years, some by the changes in the population and the rest by accumulation of the risk factors, improvement of diagnostics and the decrease of other competing fatal diseases.

Service activities

The Cancer Registry provides information for numerous epidemiological, clinical and cancer biology studies. In addition, its employees help researchers in analysis and research, and provide guidance in the choice of study design.

In addition, the Cancer Registry provides cancer researchers statistical analytics services in all stages of research projects. However, its own research focuses on a population-based approach. Routine services also include basic calculations related to cancer incidence, mortality and survival. See an example in Figure 2, where the maps illustrate standardized (age-adjusted) incidence ratios (SIR) and mortality ratios (SMR) of all registered cancer cases in Finland in 2009-2013 by hospital district.

In 2015, register data was provided over 50 times based on research permits. In addition, the Registry submitted tabulated data based on separate request for authorities, experts, researchers and the media. The Cancer Registry employees made statements or commented on nearly 80 research projects.

An invitational service operating under the Mass Screening Registry identifies women to be invited to the screening from the population register. In 2015, a total of 212 municipalities used the invitation service for cervical cancer screening invitations, and 287 municipalities for breast cancer screening invitations. All the 162 municipalities participating in the screening of bowel cancer used the invitation service.

Research

The Cancer Registry examines the  risk factors of cancer on a population-level; as well as the prevention and early diagnosis of cancer, and factors that contribute to cancer patient survival.

Many research institutes utilize the Finnish Cancer Registry’s data. The goal of all these studies is to benefit patients. Many of these studies aim at helping in cancer prevention and providing a basis for the planning and resourcing of cancer treatment, as well as information that can be used to support cancer survivors.

The Cancer Registry has conducted research in cooperation with several partners. Research has focused on for example, cancer risk caused by the environment and occupational exposures, as well as late effects of cancer treatments provided as a child and at young age.

Statistical method research, in turn, focuses on analysis methods of risk factors, the accumulation of cancers (several cancers in the same person or in the same family), and particularly the development of statistical methods in post-cancer survival assessment.

Screening studies concentrate on the development of statutory screenings, such as invitation policies; and the performance of new tests and carefully considered introduction of new screening forms. A comprehensive questionnaire survey is currently being executed to examine the effect of bowel and breast cancer screening on the target population’s lifestyle and quality of life. The potential risks of screening may be associated with a false sense of security, in which case other cancer risk factors may not receive sufficient attention. Further examinations caused by screening may also reduce the quality of life.

 

Literature

_{1. Leinonen MK, Rantanen M, Pitkäniemi J, Malila N. Coverage and accuracy of myeloproliferative and myelodysplastic neoplasms in the Finnish Cancer Registry. Acta Oncol, published online January 15th 2016}

_{2.Stakes. Ilmoitus rintasyövän ja kohdunkaulansyövän joukkotarkastuksista. Guidelines and classifications 6/2004. Helsinki: Stakes and The Finnish Cancer Registry 2004.}