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The surveyed households were informed of data protection regulations and procedure, the aims of the study, and the voluntary nature of the participation.
Regarding CPR & MV, patients were informed of data that reflects less than 7% survival to discharge for advanced cancer patients suffering a cardio respiratory arrest [ 19].
ATHENA patients are informed of data collection by their treating physician and patients can refuse further collection of clinical data according to an opt-out procedure.
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Nevertheless, all participants received written information on the FIN-D2D and they were informed of the data collection.
Yet can we deny desperate patients the procedure if they are informed of new data on risk and choose to take it?
The Office of the Privacy Commission, meanwhile, confirmed that they were not informed of the data breach.
Researchers were not informed of the data of the patients.
They were also informed of the data collection procedures which involved audio recording of in-depth interviews (IDIs).
In our intervention, GPs were informed of the data collection related to their prescribing and their consent to this was requested.
All patients or their next of kin were however informed of the collection of data and had the opportunity to not contribute with data to the registry.
Relevant district authorities granted permission, and all respondents provided verbal consent upon being informed of the purpose of data collection.
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Justyna Jupowicz-Kozak
CEO of Professional Science Editing for Scientists @ prosciediting.com