Data processing

About the data processing at the Netherlands Comprehensive Cancer Organisation (IKNL)

IKNL is vested at Godebaldkwartier 419, 3511 DT Utrecht, the Netherlands, phone number +31-88-234-6000.

The contact person for CHILL is dr C. van den Hurk, post doc researcher.

Our Data Protection Officer can be contacted at fg@iknl.nl.

 

IKNL will process personal data relevant for the CHILL study:

  • Such as type of chemotherapy, type of cancer and (if applicable) type of cooling device, as submitted by your hospital;

  • The data which you have submitted via the questionnaires.

The output will be anonymised datasets for scientific research and will also be used to give manufacturers feedback about the performance of their scalp cooling devices. The hospital has access to the data of their own patients and besides to pooled data on group levels from more than 3 other sites. No personal data will be transmitted to third parties.

If you would like to receive a copy of the data your hospital has submitted about your treatment, we refer you to your hospital. As these data will be pseudonymised before entry in the database, IKNL has no direct knowledge about what data concern which patient. The IKNL research assistant has insight into the personal details and knows the respondent number, but does not see any answers from the questionnaires. The researchers who work with the answers only see a respondent number, but no identifying details.

The data will be stored until on year after cessation of the CHILL project (i.e.at least till 2023). Thereafter the data will be will be freely available for non-commercial scientific research, subject to privacy and confidentiality restrictions. Data will be made available through Questacy (DDI 3.x XML) after the quality guidelines that are formulated in the 'Data Seal of Approval' (www.datasealofapproval.org).

Patients can always withdraw their consent. Then the submitted data will not be released any more for research or any other purpose. They will remain on file if research has been based on them in order to be able to answer queries about the validity of the research. As soon as such queries are no longer reasonably foreseeable, your data will be deleted.

You have the following rights concerning your personal data:

  • Right of access;
  • Right to rectification;
  • Right to erasure;
  • Right to restriction of processing (under specific conditions);
  • Right to data portability.

If you are unhappy with the way your data are being handled you can lodge a complaint at IKNL or at the Dutch Data Protection Authority, see : https://autoriteitpersoonsgegevens.nl/en.