If you wish it is possible to receive data from the Netherlands Cancer Registry (NCR) for scientific research or for statistics purposes (e.g. epidimiology).
IKNL may only provide data from the NCR if it is used for scientific research or statistics (e.g. epidemiology). This has been contractually agreed with the hospitals that supply a large part of the NCR data. Are you a private individual or a student? You can create your own data tables and graphs with the NCR data & figures application.
How does the data request process work?
The process consists of five main steps:
- You fill in the application form and send it to IKNL.
- We will then contact you and assist you with your request. In this phase, we prepare the application together with you. This includes things like:
- Go over the details of your research question, the methodology and the selection of data.
- Submit the data request for approval by the privacy board (CvT) and a scientific committee.
- If necessary, we will guide the linking process with third parties such as PALGA, DHD or cohorts.
- We wil make a quotation if necesarry.
- We will make sure you can formally agree to the terms and conditions.
- After agreeing to the quotation, w will retrieve, transform and format the data and set up a data dictionary.
- We will then check the data.
- Finally we will deliver the data to you. This is done in a highly secure environment.
Tools for a data request
Data in the NCR are registered from initial diagnosis up to and including the completion of first-line treatment. Read more about the registered data. Via the NCR catalog (only available for breast cancer) or the overview of item sets per cancer type you can find out what information is available in the NCR, in what form and by when.
The lead time depends on various factors, such as the complexity of the data request, the available capacity at IKNL and the cooperation and response speed of the applicant. An indication of the average lead times:
• Request basic figures (incidence, prevalence, etc.): 2 weeks.
• Standard request: 3 months.
• Complex application (several hospitals or tumor types): 4 months.
• Standard linkage (CBS, PALGA, cohorts): 4 months.
• New or complex linkage: 6 months.
Basic data, tumour-specific data and data from our own hospitals are provided free of charge. We may charge costs for:
• Data linkage with third parties.
• Additional operations (data transformation, formatting, visualization) or research activities.
• Registration of additional items and variables.
We will make a quotation for any paid activities that has to be signed by the applicant.
IKNL can only provide data if certain conditions are met. The purpose of the application must match the objectives of IKNL: improving oncological and palliative care or supporting scientific research and statistics. Requested data may only be used for the purposes stated in the request. For any other (re)use, including additional research or making it available to third parties, you must submit a new data request. If the requested data can be traced back to patients or practitioners, additional legal conditions apply with regard to privacy legislation.
The General Terms and Conditions apply.
Feel free to contact us by sending us an email.
The application form can be found here.