Incidence

Incidence is the number of new diagnoses per year. Incidence data currently shown in the app are based on data as available from the Netherlands Cancer Registry at the end of January 2024. Data from the two most recent years concern preliminary data, indicated by an asterix. Data on incidence can be viewed for sex, age and region (province) of the Netherlands.

The total incidence refers to the total of all invasive cancers plus the total of all noninvasive cancers of the urinary tract. Basal cell carcinoma of the skin (a common form of skin cancer that is almost never life-threatening) does not count in the total of all cancers. Basal cell carcinoma of the skin is also not counted in the total of skin cancers. Incidence data include the first invasive malignity per patient per cancer type only. This is in accordance with international agreements aimed at enabling comparison of data between countries. Data on all tumours per patient can be obtained through a data request.

Non-invasive tumors are not shown except for breast cancer and cancer of the urinary tract: 
In breast cancer, Ductal Carcinoma In Situ (DCIS), a non-invasive form of breast cancer, is shown but not counted in the total of (breast) cancers. 
The total number of urinary tract diagnoses does include superficial bladder carcinoma (Ta/Tis) and non-invasive pyelum and ureter carcinoma. Per patient and cancer type, only the first diagnosis counts, regardless of whether it is invasive or non-invasive cancer of the urinary tract.

Incidence data concerning thymomas seem unexpected; because this type of cancer was not properly signalled for several years, there is a decrease in incidence from 2012 throughout 2014.

For more information on the tumour classification, see Tumour classification Netherlands Cancer Registry (xls) 

Unit

When looking at incidence, you can select either the number, CR, (R)ESR and/or WSR as a unit.

• Number: (an indication of) the absolute number of new diagnoses of a type of cancer in a certain period and/or region
• CR (Crude Rate): the number of new diagnoses per 100.000 persons per year. In our application, the CR describes the number of new diagnoses per 100.000 persons in the Dutch population. The CR gives a first indication of the occurrence of cancer in a certain population. It allows comparison through time or between regions. This enables us to see if there is a lower/higher cancer rate over time, or if a decrease/increase of absolute incidence is due to an increase or decrease in population.
• ESR (European Standardised Rate): the number of new diagnoses per 100.000 persons per year corrected for the age structure of the European population (ESP, 1976). The CR will likely be higher in a region with more elderly inhabitants, since cancer is more common among the elderly. Incidence data are therefore usually standardised for the age structure of the population. In European countries data are most commonly standardised using the European age structure, resulting in the European Standardised Rate.
• RESR (Revised European Standardized Rate): a new measure fot age standardisation based on the European population in 2010. 
• WSR (World Standardised Rate): similar to the ESR, but rather than the European age structure, the world age structure is used to standardise incidence data. This rate is very rarely used in Europe, since the world age structure is also largely determined by the age structure of Africa and Asia, which both largely differ from the age structure in Europe.

Update

An update including an incidence prognosis for 2025 will follow on February 2026.

Prevalance

The application shows the prevalence of cancer. The prevalence of cancer describes all people alive on a certain date, who at some point have been diagnosed with a type of cancer. The application shows the 5-year prevalence by default. This is the number of people that are still alive 5 years after diagnosis. If you select ‘prevalence’ in the app, you can choose the 10-year prevalence and/or the 20-year prevalence as well. 

The people included under prevalence are therefore a very diverse group, including both people who have been cured as well as people who have just been diagnosed with cancer. For example, the 5 year prevalence on January 1^st 2020 concerns all living cancer patients who have been diagnosed in the previous 5 years. The 10 year prevalence and 20 year prevalence includes all living patients who have been diagnosed with cancer in the 10 or 20 years previous to January 1^st 2020, respectively.

Prevalence data can be shown categorised by sex and/or by age category. The age category is based on the age of a patient on January 1^st of the year from which is looked at the previous 5, 10 or 20 years. 

Update

Prevalence data currently shown in the NCR data app describe data as available from the Netherlands Cancer Registry at the end of January 2025. These data will be updated on February 3d, 2026.

Survival

The survival tab in the application shows the relative survival. The survival tab in the application shows the relative survival. It can be viewed by period of diagnosis , sex, age group at diagnosis and the stage at diagnosis. More information on the classification of stage can be found here.

It can be viewed for each year of diagnosis (1 year period or 10 year period), sex, age at diagnosis and the stage at diagnosis (TNM-classification). Survival data include data on all invasive cancers, except for data on children younger than 18 and data on persons who were discovered to have tumour only during obduction.

• The 5-year relative survival rate describes the percentage of patients alive 5 years after they have been diagnosed with a disease, divided by the percentage of people of the same sex and age expected to be alive in the general population at that time.

Some types of cancer, like ALL, bone cancer and eye cancer are relatively common among children. However, the survival rate shown for these cancer types are only based upon data from adult patients. Survival amongst patients younger than 18 is generally better. Questions about incidence, prevalence and survival data on children with cancer can be sent to gegevensaanvraag@iknl.nl

From 1989 nationwide coverage

Since 1989, our data covers the entirety of the Netherlands. This was the starting point of the Netherlands Cancer Registry. Survival data from 1961 until 1988 do not cover the whole Netherlands. Data from the 60’s and 70’s concern an increasing number of hospitals in the Eindhoven area. The data from the 80’s concern hospitals in the North-west and South-east of the Netherlands.

Small groups

In light of the reliability of the data, we have not calculated survival rates for groups that include less than 50 patients. The calculations of survival per stage of disease are not standardised for age. Nor is age standardization applied when combining cancer types or selecting age groups. 

Details

In the NCR data application, relative survival is shown. Because this is a ratio of observed to expected survival it may be above 100%. This phenomenon may occur in cancer types with low mortality. If the survival is above 100% it means that the survival for the patient group is higher than that of a similar group of persons (in terms of age, sex and calendar year) from the general population. This can be explained by a healthier lifestyle or an increase in patients' medical care, which may, for example, lead to earlier diagnosis of other diseases.

Update

Survival data are based on the Netherlands Cancer Registry combined with vital status data from the municipal personal records database. Survival data are updated with vital status data until January 31th 2025 and will be updated again during the summer of 2026.

Conditional survival

Survival rates usually indicate the probability of survival at the time of diagnosis. You can calculate survival rates from the time of diagnosis. But you can also calculate survival under the condition that someone has already survived for one or more years. The number that indicates the probability of survival after, say, having already survived the disease for 1 year or 2 years is called conditional survival.

Conditional survival is adjusted for the life expectancy of the general population based on age and sex (relative survival). The number thus reflects survival compared with the general population in the same age group and gender. 
The survival figures include all invasive cancers, with the following exceptions: the basal cell carcinoma of the skin (a common form of skin cancer that is almost never life-threatening), data from children under 18 years of age and data from individuals in whom a tumour was only detected at autopsy after death. Survival of non-invasive tumours is not shown.

Stage at diagnosis

Incidence and survival can be viewed by stage at diagnosis. For most cancer, stage is defined according to the TNM classification. Because the TNM classification has been updated regularly, it is possible to select the TNM edition. The following TNM editions are available: TNM 4th edition (1989-1992), TNM 4th edition, 2nd revision (1993-1998), TNM 5th edition (1999-2002), TNM 6th edition (2003-2009), TNM 7th edition (2010-2016) and TNM 8th edition (2017-present). 
For cancers of the female genital organs, stage is defined according to the FIGO classification, derived from the TNM. For lymphomas, the Ann Arbor classification is used. Separate editions are not available for either classification. Different TNM classification over time may have an effect on trends in survival rates.

Mortality

Cancer mortality describes the number of patients that die from cancer in a certain period of time (usually 1 year). Mortality data are derived from data on causes of death of the Statistics Netherlands (CBS). Data from the CBS are based on the cause of death as determined by the physician. The CBS categorises cancer types in their cause of death data according to the ICD10. Data on mortality can categorised by sex, age and region (province) of the Netherlands.

Unit

When looking at mortality data, you can select the number, CR, ESR and/or WSR as a unit.

• Number: (an indication of) the absolute number of deaths of (a type of) cancer in a certain period and/or region.
• CR (Crude Rate): the number of deaths per 100.000 persons per year. In our application, this describes the number of death per 100.000 persons in the Dutch population. The CR gives a first indication of cancer mortality in a certain population. It allows comparison through time or between regions. 
• ESR (European Standardised Rate): the number of deaths per 100.000 persons per year corrected for the age structure of the European population (ESP, 1976). The CR will likely be higher in a region with more elderly (since cancer is more common among the elderly), therefore mortality is usually standardised for the age structure of the population. 
• RESR (Revised European Standardized Rate): a new measure fot age standardisation based on the European population in 2010. 
• WSR (World Standardised Rate): similar to the ESR, but rather than the European age structure, the world age structure is used to standardise mortality. This rate is very rarely used in Europe, since the world age structure is also largely determined by the age structure of Africa and Asia, which both differ largely with the age structure in Europe.

Update

Mortality data currently shown in the application concern data as available from the Statistics Netherlands (CBS) on December 2024. Mortality data from the year 2024 will be available on this website 3th of February 2026.

Life time risk

The life time risk of cancer in the Netherland is available, for cancer in general (all invasive tumours) and for every specific cancer type. You can find the data at https://iknl.nl/nieuws/2023/kansopkanker (content in Dutch).

Cancer in Europe

Have a look at the European cancer statistics, in which data of all European cancer registries is combined, at ECIS, het European Cancer Information System. Available are the cancer incidence and mortality for each European country. 

Numbers of the cancer incidence, prevalence, mortality and survival of the Scandinavion countries are available in NordCan. 

International comparison

Check the Global Cancer Observatory of IARC for world wide statistics of trends and prognoses of cancer.

• Check the most prevalent cancer types world wide 
• Compare the standardised cancer incidence per country
• Prognosis of the number of cancer diagnoses in Europe in 2040
• Compare the cancer survival in European countries

Lifestyle factors

The IARC shows the numer of cancer cases caused by lifestyle factors. Amongst a wealth of figures are the numbers of cancer cases per continent:

•  number of cancer cases caused by alcohol
•  number of cancer cases caused by uv
•  number of cancer cases caused by overweight
•  number of cancer cases caused by infections, like HPV

Check the figures for Europe:

• number of cancer cases caused by alcohol in Europe
• number of cancer cases caused by over weight in Western Europe
• number of cancer cases in West-Europe caused by HPV, hepatitus C, hepatitus B, helicobacter pylori and other viruses

Terms and conditions for your request for the synthetic data set

Article 1

These terms and conditions apply to the provision of the NCR synthetic data set as requested by you.

Article 2

After receiving the request form, IKNL will check whether the form has been completed in full. You must complete all the required fields. IKNL will not process any incomplete requests.

Article 3

All possible intellectual property rights to the synthetic dataset, including database rights, belong to IKNL.

IKNL is granting you a non-exclusive and non-transferable right of use to the synthetic dataset. This right of use will apply for an unlimited period of time.

If you act contrary to these terms and conditions or commit an act of infringement in any other way, IKNL will be entitled to terminate the right of use granted to you. In that case you must end your use of the NCR synthetic data set immediately after notification by IKNL.

The right of use granted by IKNL will only apply to you, and possibly to the people in your organisation who are involved in the work performed within the scope of the purpose described in the request form.

Sub-licensing of the right of use granted is not permitted. In other words: you cannot share the synthetic data set with any other parties and you cannot exploit it commercially under any circumstances.

Article 4

You will handle the synthetic data provided by IKNL with care, and you will adhere to the applicable legislation and codes of conduct.

You will only use the synthetic data for the purposes mentioned in the request form. If you wish to use the synthetic data for a new application, we would like to be informed about this additional purpose as well.

Article 5

The lead times communicated by IKNL are indicative in nature and should be construed as an obligation of effort.

Article 6

You are aware of the fact that it concerns simulated data. If you are using the synthetic data for the development of software or methods of analysis with realistic results, you cannot use these results for clinical decision-making or for any scientific publications about cancer.

Making changes to the synthetic data set is permitted. Publishing of the synthetic data – whether or not they have been edited – is not permitted.

Article 7

IKNL is making an effort to ensure that the synthetic data set is as accurate as possible, but cannot guarantee complete accuracy.

IKNL will not be liable for the provision of any incorrect or incomplete synthetic data.

IKNL will not be responsible and/or liable for any damage incurred by you and/or any third parties which directly or indirectly arises from or occurs in connection with the provision of the synthetic data set, unless this damage arises from a failure by IKNL in the performance of its obligations arising from the agreements that exist between you and IKNL, including these terms and conditions.

The total liability of IKNL due to an attributable failure in the performance of the agreements or for any other reason, including any guarantee and/or indemnity obligations, will be limited to compensation of direct damage up to an amount that is equal to the amount paid by the insurance.

Does the synthetic data contain information of real patients?

No, none of the records in the synthetic data are linked to real patients. Instead, records in the synthetic data are generated based on statistical distributions. Should you find any similarities with individual patients, these will be based on coincidence.

What can the synthetic data be used for?

The synthetic data gives insight into the items that are registered in the NCR, which can help with the submission of a data request. One can also perform some experiments or develop software on the synthetic data while waiting for the data request to be approved. Alternatively, code developed using the synthetic data can safely be tested on the real data by IKNL employees, without the need for developer to see real patient information.

Can I send the code that I developed using the synthetic data to run it on the real data?

Yes, researchers can share their code with IKNL. If they would like to test the code on the real data and receive back results, they need to follow (real) data usage request process. If approved, the results can be shared if these do not contain any sensitive information.

How do I cite the synthetic dataset?

Be aware that the synthetic data cannot be used for clinical studies, as the results would be based on synthetic data. However, if the synthetic data used for exploration or software development, you can cite it with the following citation:

Synthetic dataset Netherlands Cancer Registry (NCR), Netherlands Comprehensive Cancer Organisation (IKNL). https://iknl.nl/en/ncr