Privacy statement

Princess Máxima Center, located at Heidelberglaan 25, 3584 CS Utrecht, is responsible for the processing of personal data as shown in this privacy statement.

Contact details:
Prinses Máxima Centrum voor kinderoncologie
Postbus 113
3720 AC Bilthoven

This privacy statement applies solely to the FASTigial study’s website and not to the FASTigial study itself, where personal data is processed.

Personal data that we process
Princess Máxima Center does not process personal data on this website, because no personal data can be left on our website. We also do not use social media plugins.

Special categories of personal data that we process
Sensitive personal data includes information about your health, which we process in the electronic patient record, for example, reports of consultations, test results, images, scans, and medication usage. Other sensitive personal data may also be processed if it is relevant to this research.

Is your child participating in the FASTigial study? Then you already gave permission to collect, use and store your child’s sensitive personal data. In the informed consent letter of the FASTigial study, more information about how we handle personal data is given. The website is solely used as a means to access neuropsychological tests for the purpose of the FASTigial study. No sensitive personal data is stored on this website.

For what purpose and on what basis we process personal data
Princess Máxima Center collects, uses and stores your child’s data to learn more about cerebellar mutism syndrome. Information on a group level will be used to publish the results.

How do we protect the special and/or sensitive personal data?
Princess Máxima Center takes the protection and security of your special and/or sensitive personal data very seriously and continuously takes appropriate measures to prevent misuse, loss, unauthorized access, unwanted disclosure and unauthorized modification. To demonstrably meet high standards of information security, our center is certified according to NEN7510 and ISO27001.

We implement technical and organizational measures to protect your data, including, but not limited to, the following:

Sometimes it is necessary for Máxima to engage another party to perform tasks. We ensure that this party maintains the same level of security and confidentiality as Máxima.
Data used for scientific research are assigned a code instead of your name – this is called pseudonymized data. The ‘key’ to this code is stored separately in a secure location. For all scientific research, as well as in reports and publications, we only use a code so that it cannot be traced back to your child.

If you have the impression that your data is not secure or that there are indications of misuse, please contact our customer service or FG@prinsesmaximacentrum.nl.

How long do we keep your child’s data?
Data collected for this study are stored at the Princess Máxima Center in encrypted form for at least 15 years.

View, modify or delete data
You have the right to view, correct or delete your personal data. You also have the right to withdraw your consent to the data processing or to object to the processing of your personal data by Princess Máxima Center and you have the right to data portability. You can send a request for access, correction, deletion, data transfer of your personal data or request for cancellation of your consent or objection to the processing of your personal data to FG@prinsesmaximacentrum.nl. To ensure that the request for access has been made by you, we ask you to send a copy of your ID with the request. Make your passport photo, MRZ (machine readable zone, the strip with numbers at the bottom of the passport), passport number and citizen service number (BSN) black in this copy. This is to protect your privacy. We respond as quickly as possible, but within four weeks, at your request.

Princess Máxima Center also wants to point out that you have the opportunity to file a complaint with the national supervisory authority, the Dutch Data Protection Authority. This can be done via the following link: https://autoriteitpersoonsgegevens.nl/nl/contact-met-de-autoriteit-persoonsgegevens/tip-ons

Sharing personal data with third parties
Princess Máxima Center provides personal data exclusively to third parties and only if this is necessary for the implementation of our agreement with you or to comply with a legal obligation.

In the context of this study, we may send the encrypted data of your child to countries outside the European Union. Countries outside the EU are not subject to the privacy regulations of the European Union. However, we take all necessary measures to ensure your child’s privacy will be protected at an equivalent level.

If you are convinced that we have collected personal information about a minor without consent, please contact us via FG@prinsesmaximacentrum.nl and we will delete this information.

Privacy Policy of Third Parties
This privacy statement does not apply to third-party websites that are linked from our website. The Princess Máxima Center is not responsible for the content of these other websites, nor for the processing of personal data, cookies, and other information by the administrators of these websites. For questions about these other websites, you can contact the administrators of the respective websites directly.

Cookies, or similar techniques, that we use
Princess Máxima Center uses functional, analytical and tracking cookies. A cookie is a small text file that is stored in the browser of your computer, tablet or smartphone during the first visit to this website. Princess Máxima Center uses cookies with a purely technical functionality. These ensure that the website works properly and that, for example, your preferred settings are remembered. These cookies are also used to make the website work well and to optimize it. In addition, we place cookies that keep track of your browsing habits so that we can offer customized content and advertisements. On your first visit to our website, we have already informed you about these cookies and asked permission for their placement. You can opt out of cookies by setting your internet browser so that it does not store cookies anymore. In addition, you can also delete all information previously saved via the settings of your browser. For an explanation, see: https://veiliginternetten.nl/themes/situatie/cookies-wat-zijn-het-en-wat-doe-ik-ermee/