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                                    Chapter 9224Ethics and privacyChapters 3 to 6 of this thesis are based on the results of medical-scientific research with human participants. All four studies were reviewed by the Medical Research Ethics Committee East-Netherland, which ruled that these studies were not subject to the Medical Research Involving Human Subjects Act (Chapters 3 and 4, file number 2017-3921; Chapters 5 and 6, file number 2022-13687). In all studies, both the General Data Protection Regulations and the Dutch code for Scientific Integrity were followed. In addition, the studies described in Chapters 3 and 4 were conducted according to the Netherlands Institute for Health Services Research (NIVEL) and Statistics Netherlands (SN) governance code.In order to guarantee patients’ privacy, SN linked the NIVEL and SN datasets for the studies in Chapters 3 and 4. Participants in the studies in Chapters 5 and 6 were required to provide written informed consent, and the signed papers, stored in restricted lockers, will be archived after completion of the studies. The participants’ privacy is guaranteed by the use of encrypted individual subject codes. These codes are stored separately from the pseudonymized study data on the department server, and access is restricted to three members of the research team. Data collection and storageThe data for Chapters 3 and 4 were collected and analysed and are now stored on the SN server and accessible only to those team members who have obtained SN permission. Final data were released outside the SN server only after SN had determined that their institution privacy requirements were met. These final data together with the pseudonymized transcripts of Chapters 5 and 6 are stored on the Radboudumc department server. Access to the project folder is restricted to team members who are registered in the department quality system. Availability of dataAll studies are open-access published. The data will be archived for 15 years after the study terminates. Aggregated data from the databases used in Chapters 3 and 4 are publicly available on a dedicated SN website (http://statline.cbs.nl) and NIVEL website (https://www.nivel.nl/en/nivelKatrien Pouls sHL.indd 224 24-06-2024 16:26
                                
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