For PATIENTS – Privacy Policy

Why are we collecting information about you?


We are collecting information about you to meet the objectives of the GuARDS 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 or NHS number, 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.

    Rights over information

    Your rights to access, change or move your information are limited, as we need to manage your information in specific way in order for the research to be reliable and accurate.  If you withdraw from the study, we will keep the information about you that we have already obtained to safeguard your rights, we will use the minimum personally-identifiable information possible.

    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 

     

    For PATIENTS – Contact

    I am already in GuARDS but want to talk to someone about this? 

    If you are already in GuARDS but have questions or want to discuss this with someone, you should get in touch with the GuARDS contact listed on the information sheet you were given when you signed the consent form.

    If you have lost this sheet or would prefer to discuss this with someone else, please contact your ICU doctor or nurse. It is important that you talk to the team at your own hospital as they will have access to the relevant information on your participation in the trial..

    eMail GuARDS

    If you are still finding it difficult to speak to someone about GuARDS then you can email the trial inbox guards@ed.ac.uk.

    *Please note this is a University mailbox, manned by administrative staff only. Therefore please do not include any personal or sensitive information in your initial email.

    Find Out More

    Find out more about the trial

    For more details about the trial contact: guards@ed.ac.uk 

    Or fill out the form

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