Albertine Donker

Research Data Management 363 11 RESEARCH DATA MANAGEMENT Science builds upon the discoveries of its antecedents. Therefore, the amount of progress we can make as an academic community is dependent on the information that we make available and reusable for others. Appropriate scientific research data management (RDM) is a prerequisite in this process. RDM includes the organization, storage, preservation, and sharing of data collected and used in a research project, involving the everyday management of research data during the lifetime of a research project, but also decisions about how data will be preserved and shared after the project is completed. The descriptive data presented in Chapter 4 and Chapter 6 were obtained at the Translational Metabolic Laboratory (TML), Department of Laboratory Medicine and at the Radboud Center for Iron Disorders (RCID), Radboud University Medical Center (Radboudumc). The research data presented in Chapter 7 and Chapter 8 were obtained at the Department of Pediatrics, Gastro-intestinal Medicine and Emergency Room at the Máxima MC Veldhoven. All data were collected and archived according to the Findable, Accessible, Interoperable and Reusable (FAIR) principles (Wilkinson et al , 2016, Scientific Data). The data of the patients included in the case series ( Chapter 4, Chapter 6 ) and in the diagnostic studies ( Chapter 7, Chapter 8 ) were recorded in Castor Electronic Data Capture (EDC), a cloud-based application for digital data capture and management. Data were handled confidentially. To guarantee privacy, subjects were labelled with a unique number in the RCID database; name and date of birth were not disclosed in this Castor database. A subject identification code list was used, accessible on the local server of the Radboudumc by the scientific staff members of the RCID. These investigators will be able to access the data and will safeguard the key to the code. The Information and Communications Technology (ICT) Department of the Radboudumc supports the local server of the TML. Data stored on this local server are replicated daily to servers of the Radboud University. All studies were conducted according to Dutch ethical guidelines and to the principles of the Declaration of Helsinki. All participants included in the diagnostic studies ( Chapter 7, Chapter 8 ) gave oral and written consent for participation. In case of minors, the parents or caregivers gave approval. All participants or their parents