I request access to the data collected in the digital repository of the Radboud University, established at Nijmegen, the Netherlands (hereinafter referred to as the Radboud University), and I agree to the following:
1. I will comply with all relevant rules and regulations imposed by my institution and my government, including but not limited to the General Data Protection Regulation and other relevant privacy laws. This may mean that I need my research to be approved or declared exempt by a committee that oversees research on human subjects, e.g. my Institutional Review Board or Ethics Committee.
2. I am a bona fide(*) researcher working within a bona fide research organization.
3. I will not attempt to establish the identity of or attempt to contact any of the included human subjects. I will not link this data to any other database in a way that could provide identifying information. I understand that under no circumstances will the code that would link these data to an individuals personal information be given to me, nor will any additional information about individual subjects be released to me under these Data Use Terms.
4. I will not redistribute or share the data with others, including individuals in my research group, unless they have independently applied and been granted access to this data.
5. I will acknowledge the use of the data and data derived from the data when publicly presenting any results or algorithms that benefitted from their use. (a) Papers, book chapters, books, posters, oral presentations, and all other presentations of results derived from the data should acknowledge the origin of the data as follows: "Data were provided (in part) by the Radboud University, Nijmegen, The Netherlands". (b) Authors of publications or presentations using the data should cite relevant publications describing the methods developed and used by the Radboud University to acquire and process the data. The specific publications that are appropriate to cite in any given study will depend on what the data were used and for what purposes. When applicable, a list of publications will be included in the collection. (c) Neither the Radboud University, nor the researchers that provide this data should be included as an author of publications or presentations if this authorship would be based solely on the use of this data.
6. Failure to abide by these guidelines will result in termination of my privileges to access to these data.
(*) Key characteristics of bona fide research can be considered to be as follows (cf. Medical Research Council, MRC Policy and Guidance on Sharing of Research Data from Population and Patient Studies): • An intention to generate new knowledge and understanding using rigorous scientific methods. (This includes discovery research, development and validation of methodology and technology, validating and challenging previous findings, and pilot research), and; • An intention to publish the research findings and share the derived data in the scientific community, without restrictions and with minimal delay, for wider scientific and eventual public benefit. (Recognised constraints include a short prepublication delay to ensure proper management of intellectual property), and; • The intended activities are not inconsistent with legal and ethical requirements or widely recognised good research practice. In practical terms, a research project or proposal that has been approved by a recognised funder should normally be considered to be “bona fide”.
A bona fide research organisation is one that has the capability to lead or participate in high quality, ethical research. It will have a public commitment to adhere to recognised research and information governance good practice. (It is not a requirement that such research is the primary business of that organisation, or that all of the research undertaken by that organisation is published. Nor is it a requirement that the organisation be publicly funded.)
A bona fide researcher is a person with • the professional expertise and experience to conduct bona fide research, and; • a formal relationship with a bona fide research organisation that requires compliance with appropriate research governance and management systems.