Data Use Registers
Data use registers are a key component of improving transparency and trust in the use of health data for research - they allow patients and members of the public to see and feel confident in how patient data is being requested. They are also very useful for researchers and funders to see what datasets have been made available for research.
The data use register is publicly available to view on the HDR Innovation Gateway
view the data use register
Until now there have not been any standards for data use registers, making them difficult to access, navigate and review. To address this issue and in our role as the national institute for health data science, the UK Health Data Research Alliance (The Alliance) has created the first set of recommended standards for data use registers.
At our first Data Access and Discovery webinar we heard from from Nada Karrar, our Data Access Registers Project Manager, and guest speakers, Angela Coulter, Chair of HDR UK Public Advisory Board, and Victoria Yorke-Edwards, Research Fellow at MRC Clinical Trials Unit UCL.
To watch the event recording, please click here. To view the Q&A from the event, click here. And to continue the...
How can we support adoption of the data use register standard?
Setting the standards for transparency in the use of health data
UK Health Data Research Alliance publishes first ever recommended standards for data use registers
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Communication and newsletters
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