Introduction
The Netherlands Sleep Register (NSR) is an initiative of the Sleep & Cognition group of the Netherlands Institute for Neuroscience (NIN), an institute of the Royal Netherlands Academy of Arts and Sciences (KNAW). The NSR has a web portal that participants can use to voluntarily create an account in order to fill in questionnaires about health and sleep. A second goal is to facilitate communication between researchers and possible participants in a sleep-related study, both during recruiting and during the study itself.
Participation
The NSR would like to invite you to participate in the scientific internet study of the Netherlands Sleep Register. Participating is very easy and does not take up much time. If you participate in the internet study, your data will be collected, stored and analyzed by a team of scientists.
The data will be used for research to better understand insomnia, health and disease. Special personal information will also be linked to this data. For example, ethnic background and any data from medical records known from follow-up research, DNA, polysomnography, brain scans and neuropsychological testing, sleep disorder diagnosis, etc.
All participant data will be stored in the NSR so that they can be used for research both now and in the future. Scientists may obtain these data from the NSR to use them for their research. The NSR may only grant such a request after the research project has been approved of by a scientific committee and by a medical ethical review committee.
Your data will be used for research on the causes of insomnia, the relationship with physical, mental and neurological conditions and to improve therapies for the treatment of insomnia. One of these goals is to identify subgroups with several similar characteristics. The identification of these groups might lead to a better diagnosis and new treatments. Both participants with and without sleep problems can participate in the internet study.
Privacy legislation
It is irrelevant to the study whether you can be identified. The questionnaires therefore contain no questions relating to specific personal data. Your personal data will not be stored for processing any longer than necessary but only, for instance, to perform legal duties. The privacy policy can be found in the privacy declaration of the KNAW (https://www.knaw.nl/en/about-us/academy-privacy-statement?set_language=en).
Current privacy legislation determines that the processing of data for scientific research should be reduced to a minimum. The NSR values the protection of personal data and processes them in accordance with this privacy legislation. The data that you fill out in the questionnaires will therefore be stored separately from your account data by the NSR. This means that the data from the questionnaires cannot be directly related to an individual person. The data of the individual study will be anonymized.
If you wish to opt out of the internet survey at a later stage, you can do so by writing to the NSR. Your personal data will then be deleted immediately by the NSR, as these data will not be kept longer than necessary. However, anonymized research data will be retained for general research purposes. If you nevertheless object to this, you can indicate this in your request for termination of participation. NSR will then also destroy this data.
(International) Study
Within the framework of specific research agreements, certain non-identifiable data of the NSR may be shared with other researchers from, for instance, local or international institutions. The privacy legislation also applies in these instances.
The data of the questionnaires will be stored and kept in the database, which only contains non-identifiable codes. All personal identifiable information will be kept separate from this database in a secure location on an encrypted computer. In all these instances the data will be anonymized. The receiving scientific researcher cannot link the code to the name of a participant of the NSR.
Research results can be submitted for publication in a scientific journal. If so, the information that is provided cannot be reduced to individual persons.
The storage of anonymized data for research is not restricted to a certain period of time.
Other safeguards
In addition to above-mentioned safeguards of the privacy legislation and the evaluation by scientific and ethical review committees, the NSR is bound by the Netherlands Scientific Integrity Code of Conduct. This means that according to the principles of ethical research, the NSR is responsible for the legitimate interests of the participants. You can find the code of conduct on https://www.knaw.nl/en/news/news/new-netherlands-code-of-conduct-for-research-integrity?set_language=en.
Perhaps superfluously, the NSR would like to stress that this internet study does not have any commercial purposes. The NSR receives financial aid from, a.o., the Netherlands Organization for Scientific Research (NWO), the Royal Netherlands Academy of Arts and Sciences (KNAW) and the European Union (EU) for the development and maintenance of the NSR.
Participation in the future
It goes without saying that the NSR will keep you informed of the results of the studies through this website or a newsletter by email. In view of the importance of the present research, we would like to ask your permission to approach you in the future for participation in follow-up studies and for other scientific projects. If you give your consent, we will store your contact data for this purpose.
If you give your consent, we will ask you to confirm this in writing on the accompanying consent form. Your written consent indicates that you have understood the information and agree to participate in the study. For the participation in the Internet survey, you will receive no compensation.
If you have any questions, please do not hesitate to contact us by sending an email to info@sleepregistry.org.
