Will my taking part in the study be kept confidential?

All information which is collected about you during the course of the research will be kept confidential and will conform to the Data Protection Act of 1998 with respect to data collection, storage and destruction.  Any information about you which leaves an NHS site will have your name and address removed so that you cannot be recognised. 

With your permission, your GP will be notified of your participation in the study.  However, unless there is information which puts you or others at serious risk of harm, information collected in the study will not be fed back or exchanged without your consent.

Will the researchers read the messages I post on the support website?

No, the researchers will not read the messages you post on the support website. 

What will happen if I don’t want to carry on with the study?

You are free to leave the study at any time, without giving a reason.  Information already collected from you may still be used. 

What will happen to the results of the research study?

We aim to publish the results of the study in a scientific journal but will also make them available to all participants in a non-scientific format.  All the information you give us will be anonymised so that you will not be identified in any report or publication.