What will happen with the information collected about participants?

Identifiable information about participants and the information collected about them during the trial will be stored by their local NHS research team either on paper or on their local NHS computers. Only certain members of the research team can access this information.

People who don’t need to know who the participant is won’t be able to access their name or contact details. The data will have a code number instead. Only certain members of the local research team will have the link between a participant code number and their personal information.

Information collected about each participant during the trial is called “trial information”. Participants trial information will be securely stored on password protected databases in the University of Dundee.

Trial information will be kept securely for 25 years after the end of the trial. This is a legal requirement for trials using medication. After 25 years participants identifiable information will be removed, and the rest of the information will be kept for research purposes. If participants are interested in being informed about future trials, we’ll ask them to sign a consent to allow their local research team to hold their contact details.

We’ll ask the participants permission to tell their GP that they are taking part in this trial.

Information which identifies participants will not be published or shared.

The participants de-identified (anonymised) trial information may be shared with JDRF and Lexicon Pharmaceuticals to allow them to continue their research into treatments for type 1 diabetes and heart failure. This anonymous data may also be shared with others for ethically approved future research, possibly including research with commercial organisations.