Privacy statement

Privacy statement for patients

Privacy

Information about you: how we use it and with whom we share it

Why are we collecting information about you?

We are collecting information about you to meet the objectives of the TRAITS trial.

The University of Edinburgh and NHS Lothian are the co-sponsors for this trial, and will be acting as joint data controllers along with any other entities involved in delivering the study that may be a data controller in accordance with applicable laws (e.g. the hospital where you took part in the trial). 

Upon your agreement to take part in this trial, we will collect information about you from your medical records. 

You can find out more about how the University of Edinburgh uses personal information from research participants: Privacy notice for research participants | The University of Edinburgh 

What information are we collecting?

Any information we collect about you during this trial will be kept strictly confidential.

Personal information such as your name, initials, ethnicity, date of birth, age, sex at birth, postcode, CHI number, Scottish index of deprivation, site of ICU admission, comorbidities, severity of illness will be collected by research nurses at the hospital where you took part in the trial.   The researchers in Edinburgh University will also collect information from your medical records to check your status for up to 180 days after you joined the trial. 

Information we collect about you will be kept on a secure database which is managed by the Edinburgh Clinical Trials Unit (ECTU) at the University of Edinburgh.  Information about you will be entered to the database by your hospital team while you are taking part in the trial.  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.

How long will we keep your information for?

We will hold the personal data you provided us for 5 years after the trial has finished.   We’ll write our reports in a way that no-one can work out that you took part in the study.

More information

You can find out more about how we use your information:

You can read more about the University of Edinburgh privacy policy here: Continued privacy statement (opens in a new tab)