What happens when patient data is made available for research?
All data is made available for research when the Panel lead decides to push anonymised data to the research database once the panel has been closed. A new patient ID is generated to the Panel and the nickname is removed. The only information contained on the database is clinical data collected as part of the panel, a small amount of panel admin data and a decision column as the outcome of the consultation interaction. Data in the ERN database can be exported by authorised researchers in several formats with no identifiable data.

Clinical data in the low accessibility database is made available conditionally dependent on if the patient has consented for information to be shared on ERN Databases/Registries. ERN authorised users will be able to access the research environment in the CPMS to conduct research activities and export data.

A feature of the ERN Database is the Query Builder that allows the user to generate customised reports. Authorised users can access the app by clicking on the ‘Research’ link.
Last Updated: 24 Jan 2019
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