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For future and (ex-)participants in HOVON trials
The General Data Protection Regulation (GDPR) has been in force since 25 May 2018. This new data protection law offers more and stronger privacy rights for everyone in Europe and also applies to you as a participant in a HOVON trial.
The GDPR offers you more control and more options for standing up for yourself in the processing of your personal data, including your trial data.
HOVON fully respects your privacy and that of your personal data in the context of our trials. We do our utmost to process your data in a safe, reputable way and in accordance with the GDPR and other relevant legislation and regulations.
This Privacy Declaration contains information about what the GDPR means for you as a participant, ex-participant or future participant in a HOVON trial.
Your rights as a participant or ex-participant in a HOVON trial
You may possibly be taking part in a HOVON trial at this moment or perhaps you have taken part in one of our trials in the recent past.
As you undoubtedly know, you were informed prior to your participation in the study about exactly what happens to your personal data, how long they will be kept and who from the trial may inspect them. At the same time you gave your consent for your data to be recorded and used in the context of the trial concerned by signing the informed consent form.
You therefore do not need to give consent again to the use of your data. However, it may be important for you to be informed of your additional rights accorded by the GDPR. Therefore see 'Your additional rights' below.
Your rights as a future participant in a HOVON trial
Are you due to participate shortly in a HOVON trial? If so, then the additional rights accorded by the GDPR also apply to you (see 'Your additional rights' below). Before participating in the study, you will be informed about what exactly happens to your personal data, how long they will be kept and who from the trial may inspect them. This is done by means of the Patient Information Form. By signing an informed consent form, you then officially consent for your data to be recorded and used in the context of the trial.
Your additional rights
Legal basis: the legal basis for processing your data in the context of the trial in which you are participating consists, on the one hand, of the informed consent form that you sign and, on the other, of the legislation and regulations governing the conduct of clinical trials, including Good Clinical Practice (GCP), the European Clinical Trials Directive (Directive 2001/20/EC) and the Medical Research Involving Human Subjects Act (WMO).
Person responsible for your data: the sponsor of the trial in which you are participating is responsible for processing your personal data.
Right of information: you have the right to request information about your personal data that have been collected, processed, and possibly transferred to a third party in connection with the trial. During the course of the study, however, it is not permitted to release certain data because of legislation and regulations governing clinical trials.
Right of rectification: you have the right to have any inaccurate personal data rectified. Rectification can only be undertaken within and in accordance with the legislation and regulations governing clinical trials.
Right of erasure: under certain circumstances you have the right to ask that your personal data are removed, in other words, "forgotten'. Only the scientific trial data collected from you up to that point will be used for the study. No further new data will then be collected from you and/or processed.
Right of restriction: in certain cases, in accordance with the legislation and regulations governing clinical trials, you have the right to obtain a restriction on the processing of your data.
Right of data portability: you have the right to request your personal data and – where technically feasible – to receive these data converted into a standard format for the purpose of transfer to another party. In accordance with legislation and regulations governing clinical trials, this is not possible during the course of a study.
What if you have any questions or complaints?
Despite the many reports in the media about the new GDPR, we can well imagine that questions or uncertainties may have arisen in your mind about the privacy of your personal data.
If you have any questions or complaints about the processing of your personal data, we advise you initially to contact the contact persons of your own hospital in which you are participating or have participated in the trial. You may, for example, ask your question by telephone or pose it during your next visit to the hospital. You can also contact the Data Protection Officer of the hospital in which you are participating, have participated or will participate in the study or the Dutch Personal Data Authority.
If you have any questions about your rights, you can contact the sponsor’s Data Protection Officer (in the case of a sponsor-initiated trial) or that of your trial site (in the case of an investigator-initiated trial).
For extensive, more general information about the GDPR and your rights, we advise you to consult the Dutch Personal Data Authority website. You can access this website via the following link: https://autoriteitpersoonsgegevens.nl/nl/onderwerpen/avg-europese-privacywetgeving/algemene-informatie-avg