Data processing
About data processing at the Netherlands Comprehensive Cancer Organization (IKNL):
IKNL is vested at Godebaldkwartier 419, 3511 DT Utrecht (phone number +31-88-234-6000). Our Data Protection Officer can be reached via email at fg@iknl.nl.
IKNL will process personal data relevant to the CHILL study:
- Such as type of chemotherapy, type of cancer, and (if applicable) type of cooling device, as submitted by your hospital (in case your health care professional has provided your account). Or you submit this data yourself (in case you have submitted your own account and password);
- The data you provided through the questionnaires.
The output will be anonymized 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 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 pseudonymized before entry into the database, IKNL has no direct knowledge about what data concerns 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 the end of the CHILL project (at least until 2028). Thereafter the data 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 (www.coretrustseal.org).
You can always withdraw your consent. Then the submitted data will not be released anymore 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 regarding your personal data:
- Right of access;
- Right to rectification;
- Right to erasure;
- Right to restriction of processing (under certain 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: www.autoriteitpersoonsgegevens.nl/en.
Anonymity
A Reminder
Patients who do not submit a questionnaire on time will receive a reminder. How is this possible? Here’s how: everyone who is registered through the hospital receives a respondent number. This number is linked to your questionnaire. We use the respondent number to send a reminder to those who have not yet completed a questionnaire. This is an automated process.
Since human intervention is sometimes required, the research assistant has access to the identifying information and the corresponding respondent number. These details are not visible to the researcher.
Anonymity and Confidentiality
Your answers to the questions will be processed confidentially. We guarantee that the information we present will never be traceable to individual people. The answers from individual patients are not directly linked to their names or email addresses. The research assistant has insight into the personal details and knows the respondent number, but does not see any answers from the questionnaire. The researchers who work with the answers only see a respondent number, but no identifying details.
Your name or email address will never be shared with others. We use all data exclusively for access to the questionnaires and for analysis or research purposes. Even if you lose your login name and password, no one can access the research data, as an additional unique access code is required each time you log in. This enhances the security of the database.
If you have given permission to use your email address for a reminder, we will contact you by email to request that you complete the next questionnaire. If you have given permission, your email address will also be used to send you a questionnaire about hair regrowth nine months after completing the last questionnaire. After this contact, your email address will be deleted from the database.
As the explanation above shows, we handle information carefully: your details and answers will be stored separately and never made available together anywhere.