Research data management 241 A Research Data Management Ethics and privacy This thesis is based on the results of medical-scientific research with human participants. The studies described in Chapter 3, 4 and 6 were not subject to the Medical Research Involving Human Subjects Acts (WMO). The medical ethical review committee ‘METC Oost-Nederland’ reviewed the study protocols (file numbers: 2019–5618, 2020-6643, 2022-15954). Informed consent was obtained from research participants prior to inclusion in the studies. Technical and organization measures were followed to safeguard the availability and confidentiality of the data, such as the use of secure data storage, access authorization and pseudonymization of the data. Data collection and storage The data for Chapter 3, 4 and 6 was collected through electronic surveys using CASTOR EDC, audio interviews and participatory design sessions. The pseudoanonymized survey data was exported from CASTOR EDC to a secure server of the Radboudumc department and were only accessible by members of the research team working at the Radboudumc. Survey data was analysed using R.Studio. Interview data was audio recorded and professionally transcribed verbatim and anonymously. Qualitative and design data was stored on a secure server of the Radboudumc and were only accessible by members of the research team. Qualitative and design data was analysed using Atlas.ti. Hardcopies of informed consent forms are archived at the department. Availability of the data All studies in this thesis are published open access. The data will be archived for 10 years after termination of the study. Reusing pseudonymized survey data for future research can be made available upon request under restricted access. Interview data is only accessible for reuse after renewed permission by the participants.
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