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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.
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To obtain good performance on the GPU hardware, it is necessary to design algorithms to manage data, access memory under GPU memory hierarchy, and schedule more efficient threads.
While this gives employees a lot of flexibility, IT still remains in control and can manage data access according to the company's policies.
On first impression, the decision to manage data access for secondary use seemed puzzling – particularly as it was made by a group of researchers who were vocally committed to the open access agenda.
Researchers recognised that managing data access countered the prevailing norms and funders' expectations, and that it would be important for them to be able to provide a very clear and strong justification for placing any restrictions on the release of data.
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.
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