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The repository is managed by a team of 5 elected "responsible data managers" who are members being data depositor a.k.a contributors. The management team is elected for 3 years among all data depositors. Decisions are taken by majority vote.
Any researcher that deposits a full dataset (as agreed at the time of deposit by the management team) becomes a contributor and can be asked to be part of the management team. This allows to minimize potential conflicts of interest and ensures good management / data access for all.
The management team includes 5 contributors - once a request is made to access the repository, the management team members receive an email to indicate if the request should be denied. If within 48 hours (working days) no reply is received, access is granted.
Data access for non-contributors
To gain access to the repository, users will have to register (see what happens to your user personal data here). The registration follows a simple 2 steps procedure:
1 – future users register on the website giving their name, full professional address and email. 2 – the management team verifies that a user is a real person belonging to academia or industry, and if so access will be granted without further questions. If access is denied, an explanation will be given.
By maximising data access, we ensure maximum use of the data by the research community (academic and industrial) and potentialize benefits for patients. Datasets can, however, be restricted to academics only, depending on the licence. If you do not contribute to the repository, only data older than 1 year will be accessible. 'Fresh' data are for contributors only. The reason for this policy is to encourage data sharing, i.e. you share and you are rewarded for it.
Data access for contributors
Contributors to the repository have a one-year advance on data access, and this is made permanent (once you deposit data you become a contributor forever). Note that if you are working in the industry, the same restriction applies as for non-contributors.
Free to use
Data access and deposit is free. If you plan to use enbit for a future research, we would welcome a contribution which would typically cover basic infrastructure (small cost) - just email us to discuss details.
Monitoring the Database’s systems and procedures
Every data access will be logged, i.e. the name of the person accessing data, the data accessed and the date will be stored indefinitely. Log files are not monitored but could be accessed for audit purposes.
Imaging data will be stored in nifti format and fully anonymized using a dedicated software which removes all identifiable tags from images (no personal information). In addition, we will use dedicated defacing algorithms that remove face, ear and dental information.
Participants’ metadata will only contain clinical scores and/or surgical outcomes. Metadata may contain age but not the date of birth, country of origin or residence but not address or postcode. Metadata and images can also be linked to patient ID (ie using pseudo-anonymization), but only for each centre locally - no linkage is stored in the ENBIT repository. Patient presenting unique characteristics will NOT be included because of a risk of identification.
Data usage, licence and user agreement
Users can download the data for whatever reason they see fit. Data access is only restricted to being a researcher in academia or industry. Some datasets might be restricted to academia by a non-commercial license. Upon registration, user accounts are set to be able to access or not, such datasets.
Data usage is however limited by licences and/or user agreements. The repository is structured around projects, each project sharing data independently but using the Brain Imaging Data Structure (http://bids.neuroimaging.io/). In each project, there is a licence and/or user agreement and users must conform to those, which might differ between projects. As a contributor we suggest to use an open licence like ODbL but this is left to you.