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Other studies required that results could be shared but only via a managed data-access process.
Table 1 is a checklist that captures the crucial questions that, from experience, are useful to raise and address when establishing a managed data-access system.
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For many project managers in consortia where large datasets are managed, data access can become a full time occupation.
The data generated during the project was then made available to researchers outside UK10K via the EGA at the European Bioinformatics Institute (EMBL EBI), Hinxton, Cambridge, UK, which has the infrastructure to facilitate managed data access to data files.
CJB managed data access agreements and authorisations, and analysis safeguards.
This paper outlines the history behind open-access principles and then goes on to describe UK10K's managed data access process.
Another example of reconciling existing mechanisms for managed data access with that of the project is provided by the inclusion of the Generation Scotland sample set.
Several databases exist that document clinical variation, such as the Human Gene Mutation Database (HGMD), ClinVar and the LOVD, and managed data access models are being developed.
Secondary researchers are those who have accessed UK10K data in the EGA via the managed data access mechanisms for their own independent research, and have no role in the feedback process once they have informed the project of their finding.
To control responsible integration of research and diagnostics, CGCs should develop a framework that manages data access responsibly, i.e. respecting the rights of patients and optimal care, while not hampering research needed to obtain answers to the questions of these same patients and families.
While this gives employees a lot of flexibility, IT still remains in control and can manage data access according to the company's policies.
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Justyna Jupowicz-Kozak
CEO of Professional Science Editing for Scientists @ prosciediting.com