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3. Will my information be kept secure?

Key message: we will take all necessary measures to ensure that information about you is sent and stored securely by us or by anyone else acting on our behalf.

We will take all necessary measures to ensure that information about you is stored securely by us or by anyone acting on our behalf. We will also make sure that when information is sent to us, or by us to someone else working on the study, it is done securely, in a way that means your information will get to the correct person.

In some of our studies, we collect information about you on paper forms. Your hospital will send most information about you to us by post. This will include a copy of your completed consent form, so that we can be sure you have agreed to take part in the study. For some studies, we will also collect your contact details on a paper form. We will ask your study doctor or nurse to send the consent form and contact details form (if applicable) separately from other information about you. This means that, in the very unlikely event that these forms did not reach the right person, the person receiving them would only have limited information about you. The study forms only show your initials, date of birth and a unique study identification number, so in the unlikely event that they do not reach the right person, no one will be able to know that the information is about you.

In some other studies, we ask your study doctor or nurse to enter information directly into our secure study database. This information is stored securely within the database from the moment it is added. Each member of staff working on the study at your hospital has their own login details to access the database, and they can only see information about you and other patients at your hospital. This means staff at other hospitals cannot see any information about you.

Sometimes we will also receive information about you by email or fax. Emails we get from your study doctor or nurse will never contain your name, only your unique study identification number and sometimes your initials and date of birth. Fax is used to securely send us documents such as your completed consent form, or information that we need to receive urgently (for example, to find out about issues affecting your safety – see section 1.6). Fax machines are located in secure areas, meaning only authorised people can access any faxes received.

Some particularly sensitive documents (for example, medical images or photographs, if these are needed for a study) will be sent to us via a ‘secure file transfer’. This means information is sent by the internet in a very secure way.

All information will be sent to the Clinical Trials Research Unit (CTRU) at the University of Leeds. All information on paper documents is stored securely in locked cabinets, accessible only to people who need access to help run the study. Everyone who works at the CTRU signs a confidentiality agreement when they begin their employment. This agreement says that they have to treat all study information correctly and confidentially.

Information stored in our databases or other electronic storage locations is held very securely, in a way that would make it very difficult for any unauthorised people to access it.

When we need to share information with other organisations or individuals (see section 5), we will send it to them securely, and we will not send any information to them until we are sure that they will store all information securely.