EMBARC
The European Bronchiectasis Registry
The European Bronchiectasis Registry
EMBARC Transparency Notice
In this research register we (the Sponsor, University of Dundee) will use de-identified information from you and your medical records. We will only use information that we need for the research register. Only your local research team will know your name or contact details, and only if they really need it for this study.
Everyone involved in this study will keep your data safe and secure. We will also follow all privacy rules.
At the end of the study we will save the data for future research.
We will make sure no-one can work out who you are from the reports we write.
How will your information be used?
Your local research team will need to use identifiable information from you and your medical records for this research project.
This information will include your name, hospital identifier and contact details. Your local research team will use this information to do the research or to check your medical records to make sure that the research is being done properly. This personal information will not be passed to anyone outside of your local research team.
People who do not need to know who you are will not be able to see your name or contact details. Your data will have a code number instead.
Your local research team will keep all personal information about you safe and secure.
We (the Sponsor) will receive de-identified information about you from your local research team to include in the research register. We will keep all de-identified information about you safe and secure.
Some of your coded information will be sent to other countries. They have agreed to follow our (UK/EU) rules about keeping your information safe.
What are your choices about how your information is used?
Where can you find out more about how your information is used?
You can find out more about how we use your information
Sponsor website
https://www.dundee.ac.uk/tasc/
Sponsor Data Protection Officer
Dr Richard Parsons, r.parsons@dundee.ac.uk