Privacy statement clinicaltrialregister.nl
Our vision on privacy
All people – including employees – have a right to respect for their privacy. In order to achieve our societal and organisational objectives, the clinicaltrialregister.nl has to be able to collect and share data. Protecting personal data and processing data in accordance with the law are key elements of this process. Clinicaltrialregister.nl attaches great importance to respect for privacy. We process personal data in a lawful, fair and transparent manner, in full accordance with the law.
This privacy statement explains how the clinicaltrialregister.nl deals with personal data.
Below we aim to answer the following questions.
- What is personal data?
- Why does clinicaltrialregister.nl process your personal data?
- How do we deal with your personal data?
- When do we share your data?
- How is your data used in scientific research?
- How can you contact us about your rights?
Privacy legislation is always evolving, so this privacy statement is updated regularly.
Learn more about your privacy when using this website.
What is personal data?
Personal data is information that directly concerns a specific individual or can be traced back to him or her. Examples of personal data include postal addresses, telephone numbers and email addresses.
Special categories of personal data
Some personal data is particularly sensitive, because its collection and use can have a big impact on someone’s life. Data concerning someone’s race, religion or health is considered sensitive personal data. This kind of data enjoys special protection under the law. Likewise, children’s personal data and criminal record or judicial data are always considered sensitive, and are therefore always subject to extra protection.
Clinicaltrialregister.nl does not process any sensitive personal data.
For more information about personal data please visit the website of the Data Protection Authority.
Why does clinicaltrialregister.nl process your personal data?
Clinicaltrialregister.nl implements article 35 of the Declaration of Helsinki: “ Every research study involving human subjects must be registered in a publicly accessible database before recruitment of the first subject.”
The data registered is based on the WHO Trial Registration dataset. Which determines that it is required to register the name, e-mail address, telephone number and postal address from the scientific- and public contact person of a study.
How do we deal with your personal data?
The clinicaltrialregister.nl applies a number of principles when processing personal data and takes measures to ensure it handles data in a reliable, fair and careful manner.
Purpose and legal basis
Clinicaltrialregister.nl processes personal data only if it has a legal basis for doing so, or if consent has been granted. We ensure that personal data is processed only for the specific purpose for which it was collected. If consent has to be granted, it can also be withdrawn at any time.
The least amount of data possible
Clinicaltrialregister.nl never processes more personal data than is necessary. If possible it processes less data or none at all.
Minimising the infringement of privacy
Clinicaltrialregister.nl ensures that any infringement of privacy is not disproportionate to the purpose for which the data was collected. If we have a choice of different types of personal data we could process for a given purpose, we always opt for the data that constitutes the least infringement of privacy.
The clinicaltrialregister.nl keeps your personal data:
- only for as long as is necessary to achieve the purpose for which it was collected;
- only for the length of time required by the Public Records Act; and
- for no longer than is permitted under the law.
Measures (reliability, integrity and confidentiality)
Clinicaltrialregister.nl employs a range of measures to ensure that your personal data is dealt with in a reliable, fair and careful manner.
- All personal data is treated in confidence. This means your data can be processed only by persons with both the proper authority and a duty of confidentiality.
- Personal data is protected effectively. At a minimum we observe the rules and standards on information security laid down by central government.
- Clinicaltrialregister.nl makes agreements about security measures with external parties such as software providers and data centres. And we monitor whether external parties comply with these agreements.
When do we share your personal data?
In certain cases clinicaltrialregister.nl is authorised, and sometimes even required, to provide data and information to or request them from other organisations (public or otherwise).
The name and contact details of the contact persons of a study are published on the part of the website available for the general public.
Clinicaltrialregister.nl intends to participate in the ICTRP Registry Network from the WHO. Once clinicaltrialregister.nl is aknowledged as Primary register or Data provider, data will be shared with the ICTRP register.
Clinicaltrialregister.nl is maintained by the Central Committee on Research Involving Human Subjects (CCMO). CCMO is an independent administrative agency (ZBO). This means that it is a governmental body. CCMO is accountable to the Ministry of Health, Welfare and Sport.
When it comes to your personal data, you have several rights (in Dutch), such as the rights to access and rectify your data. If you wish to know what personal data of yours we have processed you can submit a request to this end. The Ministry of Health Welfare and Sport will respond to your request within one month.
Proof of identity
If you wish to exercise one or more of your privacy rights, don't forget you will need to provide proof of identity. Valid forms of ID include your passport or driver's licence. You can use the smartphone app KopieID to make a secure copy of your identity document. This app was developed by the Ministry of the Interior and Kingdom Relations. Learn how to download it (in Dutch).
You can submit requests to us in two ways:
- Online, send an email to: firstname.lastname@example.org
- By post (don't forget to sign the letter):
Ministry of Health, Welfare and Sport
Information Policy Department / Chief Information Officer
2500 EJ Den Haag
If it should turn out that your personal data is incorrect, incomplete or irrelevant, you can submit an additional request for your details to be amended or supplemented.
Data Protection Officer
Clinicaltrialregister.nl has a data protection officer. This person is an independent appointee who monitors whether the Ministry applies and complies with the rules laid down in the General Data Protection Regulation (GDPR). The Dutch Data Protection Authority is responsible for supervising the application of privacy legislation.
If you have a specific question or wish to lodge a complaint, you can contact the Ministry's data protection officer. You can do this in two ways:
- Online, send an email to: FG-VWS@minvws.nl.
- By post write to,
Ministry of Health, Welfare and Sport
Administrative and Political Affairs Department
2500 EJ Den Haag
You can also obtain information about your rights or lodge a complaint by contacting the Data Protection Authority.