Apply for data
Clinicians, physician epidemiologists or policymakers can request customized data from the Netherlands Cancer Registry (NCR). The data can also be linked to your own patient data (only for patients from the Netherlands). We provide the data in accordance with Dutch privacy regulations and strict terms and conditions.
Each request is checked by both a privacy committee and a scientific committee. In case your request for data concerns a research question for which a prior application has already been approved, IKNL cannot provide you with the data. The procedure from first contact until the delivery of the requested data takes about 6 weeks.
- Healthcare providers (and allied professionals), (clinical) researchers and policy makers may apply for customised data sets from the Netherlands Cancer Registry (NCR).
- Patients, students and other interested parties may consult the publicly accessible NCR data & figures, where you may compile aggregated data on cancer incidence, prevalence, mortality and survival according to cancer localization, province of the Netherlands, patients’ sex and age. Please also find our explanation about the data and graphs available.
How is your application for data processed?
The following nine steps outline the procedure according to which data applications are processed:
- An applicant fills out the data application form.
- A consultant from the NCR Analysis department will contact the applicant within 5 working days.
- An application form will be completed in consultation with you, and your application is assigned a reference number.
- The NCR Analysis consultant sends the applicant the completed application formby e-mail.
- The applicant is required to sign the application form and, upon signing, to return the document to the department of NCR Analysis by mail, together with required documents (in case the application concerns data containing identifiable information about individual hospitals, additional signing by a member of all Boards of Directors of all hospitals involved is mandatory. Additional signing is also needed in case data were requested by a non-practitioner working at the hospital).
- The application is reviewed by the NCR’s Supervisory Committee (SC) for the compliance with IKNL objectives as well as national privacy legislation. For several cancer types, data requests for the purpose of conducting scientific research are additionally reviewed by an external scientific committee. This applies to data on oesophageal, stomach, and pancreatic cancer, brain tumours and haematological cancers. Please click: more information on the scientific review procedures.
- If applicable, following a positive advice from the SC, the applicant will receive an offer for the services provided by NCR Analysis to deliver the data. In case of a negative advice from the SC, the applicant may opt to adjust and revaluate the data application.
- If applicable, applicant is asked to sign the offer and return it by email.
- The requested data will be made available to applicant via a secure download environment. If applicable, an invoice is sent to the applicant by email.
The average lead time for data application is approximately 6 weeks (calculated from the date that all signed documents are received by IKNL; documents include the signed application form, approval by the SC and, if applicable, a signed offer).
Linkage with data from third parties
Data from the NCR may be linked to datasets from third parties, like the nationwide network and registry of histo- and cytopathology in the Netherlands (PALGA). Please click: more information on IKNL-PALGA linkages.
A linkage follows the same procedure as described above, with the exception of step 8. In this step, an offer will always be drafted and sent for signing by the applicant (by email). In case IKNL is to perform the linkage with the NCR database, applicants need to submit their data in a fixed format. In case of data linkage, applicants need to consider a longer lead time because of the complexity of the process.