242 DATA MANAGEMENT FORM General information about the data collection The research in this thesis involves the data of individuals. Oral and/or written informed consent the collection of the data was obtained from the participants and/ or from their parents. All studies were performed in accordance with the principles of the Declaration of Helsinki. The medical and ethical review board Committee on Research Involving Human Subjects Region Arnhem Nijmegen, Nijmegen, the Netherlands has given approval to conduct these studies. FAIR PRINCIPLES Findable: Data were initially collected and stored in a secure “drooling” database (named DROOLING_ TBL_2007.MDB), whichnowserves as aback-up. Access to this database is protected by the department of Rehabilitation of the Radboud university medical center. Documentation (i.e. read me file) to describe the datasets is provided on the department server. All necessary anonymized data for each study is converted to CASTOR for subsequent analysis in SPSS. Accessible: Only members of the research group have access to the database. Paper records are stored in the department’s archive. The data is not available in a public repository yet. However, all data will be available on request by contacting the corresponding author or the staff secretary of the department of Rehabilitation of the Radboud university medical center (secretariaatstaf.reval@radboudumc.nl). Interpretable: Documentation has been added to the datasets to make them interpretable for external researchers. The map contains links to publications, references to the location of the datasets, and a description of the datasets. The data are stored in SPSS format. No existing data standards have been used such as vocabularies, ontology’s or thesauri.
RkJQdWJsaXNoZXIy MjY0ODMw