A detailed understanding of cancer burden at a population level is important for cancer control efforts aimed at reducing the incidence, morbidity and mortality of cancer.1 In Sweden, all healthcare providers are required to register new cancer cases in the Swedish Cancer Register (SCR). Healthcare providers report patient characteristics, diagnostic information (e.g. tumour type) and follow-up details (e.g. date of migration) to regional cancer registers. Regional data are consolidated into the SCR once a year.2 Sweden also has 20 non-mandatory quality registers that collect treatment and patient outcomes data for different types of cancer.3 Data from the SCR and quality registers can be linked using people’s personal identification numbers to create a detailed overview of the cancer patient pathway. Data from the cancer registers have been used to improve cancer treatment and outcomes – specifically, improvements in survival rates among people with acute lymphoblastic leukaemia were achieved and increases in the uptake of clinical guidelines for prostate cancer were shown as a result of the register.4 5



Cancer control involves efforts to reduce the incidence, morbidity and mortality of cancer through evidence-based interventions spanning prevention, diagnosis, treatment and palliative care.1 For cancer control to be effective, initiatives have to be informed by a detailed understanding of cancer burden at the population level. This may include information about cancer incidence, prevalence, risk factors, protective factors, healthcare costs and patient outcomes.6 Collecting population-level cancer data is challenging and resource-intensive. As such, these data collection initiatives require adequate governmental support both in terms of funding and healthcare policy.1


Sweden was one of the first countries to implement a government-funded national cancer register – a centralised database that collects healthcare information about all people diagnosed with cancer.4 7 It is compulsory for all healthcare providers in Sweden to report new cancer cases to the Swedish Cancer Register (SCR), meaning that the database covers the entire population of Sweden. Approximately 50,000 new cancer cases are registered in the SCR every year, with data completeness estimated at 96%.2

Healthcare providers report new cases to one of six regional cancer registers (one for each medical region in Sweden), where incoming cases are reviewed for accuracy and coded. Regional data are consolidated into the national registry once a year. The regional registers increase contact between the SCR and reporting healthcare providers, thereby simplifying the process of reviewing and correcting incoming data.2 The SCR includes:

  • patient data: personal identification number, sex, age and place of residence
  • medical data: tumour site, tumour histology, cancer stage, basis of diagnosis, date of diagnosis, reporting hospital and department, reporting pathology/cytology department and the identification number of the tissue specimen used for diagnosis
  • follow-up data: date and cause of death; date of migration.2

Sweden also has 20 cancer-specific quality registers that collect treatment and outcomes data for specific types of cancer.3 While reporting to the quality registers is not mandatory, most quality registers have a high level of data completeness.5 Data from the SCR and cancer-specific quality registers can be linked based on personal identification numbers, giving the Swedish government and healthcare researchers a detailed overview of clinical practice and patient outcomes on a national scale.4


What has it achieved?

A report published in 2009 found that Sweden had the best healthcare outcomes in Europe, despite national healthcare costs falling around the European average.8 The national registers were instrumental in improving clinical practice; they informed the design, implementation and evaluation of improvement initiatives and guided funding priorities for the Swedish healthcare system.4

One area where the Swedish cancer registers drastically improved treatment and outcomes was for acute lymphoblastic leukaemia (ALL). All children being treated for ALL were monitored through various cancer registers, giving paediatric oncologists detailed information about treatment characteristics and patient outcomes. Based on these data, paediatric oncologists were able to:

  • refine ALL treatment by introducing new drugs and optimising treatment dosages
  • tailor ALL treatment to patient sub-populations with different treatment responses.4

These developments increased the five-year survival rate for ALL in Sweden from 9% (1968–72) to 89% (2002–05).4

The Swedish National Prostate Cancer Register publishes annual reports on care quality and patient outcomes in prostate cancer. These reports led to increased uptake of clinical guidelines – they decreased the use of low-value procedures (e.g. bone scans in low-risk prostate cancer) and increased the use of evidence-based cancer management (e.g. active surveillance in low-risk prostate cancer).5


Next steps

Future efforts will focus on improving the completeness of the SCR, particularly for soft tissue cancers, nervous system cancers, leukaemia and lymphoma.9

Funding applications for the national quality registers now require the inclusion of patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs). However, the use of these measures still varies considerably – some registers have attained nationwide use while others are running small-scale pilot studies. Future efforts will focus on increasing the use of PROMs/PREMs in national quality registers to ensure the representation of patient experiences in national data.10


Further information

  • The Swedish Cancer Register website
  • The Swedish Cancer Register database
  • The National Cancer Quality Registers website
  • The Swedish Quality Registers healthcare improvement website


  1. World Health Organization. 2002. National cancer control programmes: policies and managerial guidelines. Geneva: World Health Organization
  2. Socialstyrelsen. The Swedish Cancer Register. [Updated 09/05/19]. Available here: [accessed: June 2019]
  3. Nationella Kvalitetregister. Swedish National Quality Registries Available here: [accessed: June 2019]
  4. Larsson S, Lawyer P, Silverstein MB. 2010. From concept to reality: putting value-based health care into practice in Sweden. Boston: The Boston Consulting Group
  5. Cazzaniga W, Ventimiglia E, Alfano M, et al. 2019. Mini Review on the Use of Clinical Cancer Registers for Prostate Cancer: The National Prostate Cancer Register (NPCR) of Sweden. Frontiers in medicine 6: 51-51
  6. Parkin DM. 2008. The role of cancer registries in cancer control. International journal of clinical oncology 13(2): 102-11
  7. Larsson S, Lawyer P, Garellick G, et al. 2012. Use of 13 disease registries in 5 countries demonstrates the potential to use outcome data to improve health care's value. Health affairs (Project Hope) 31(1): 220-7
  8. Björnberg A, Cebolla Garrofé B, Lindblad S. 2009. Euro Health Consumer Index 2009 Report. Marseillan: Health Consumer Powerhouse
  9. Barlow L, Westergren K, Holmberg L, et al. 2009. The completeness of the Swedish Cancer Register – a sample survey for year 1998. Acta Oncologica 48(1): 27-33
  10. Nilsson E, Orwelius L, Kristenson M. 2016. Patient-reported outcomes in the Swedish National Quality Registers. J Intern Med 279(2): 141-53