Who else will know about my taking part in the study?
When you complete the first survey, you will also be asked to tell us who you usually see about your eating disorder, for example your doctor or specialist, or the team who treats you. We will send them a letter to say you are taking part in the study, and ask them to confirm your age, diagnosis, BMI, and that you are having treatment for your eating disorder. We will also ask them whether they know of any reason for you not to take part.
Reasons you might not be able to take part in the study
If the clinician tell us that you that you need treatment for your eating disorder that you have decided not to have, you won’t be able to take part in this study.
You also won’t be able to take part if you have other serious problems that complicate your eating disorder. For example, Bipolar Affective Disorder, using a lot of alcohol or non-prescribed drugs, or having serious physical problems.
It is very unlikely, but if there is good reason for you to stop the study, we will talk to you and your carer about this to decide what to do and make sure you are supported.
Might my answers be shared with my carers or treatment team (or parent/guardian, if under 16)?
We will share your answers about your name, age, address, BMI and diagnosis with your clinician. Apart from this, we will keep all your answers confidential, unless we have a very good reason to be worried that we need to share this information to stop serious harm coming to you or someone else. For example, if you told us on the questionnaire that you were going to harm someone. In a situation like this, we would always talk to you about, it we could, before sharing it with anyone else. If we had to do this, we would share the smallest amount of your information that we could. It is very unlikely that this would happen though.
Is there any risk I might be harmed by taking part?
As you will be just be filling out questionnaires online, we do not have any reason to expect that this could harm you. If you find you become distressed and would like to talk to someone, you can call us on the number above or the Beat helpline on 0845 634 1414 (adults) or 0845 634 7650 (young people under 25).
What if something goes wrong?
Any complaint about the way you have been dealt with during the study will be addressed. To start with, please contact the researcher (email address above). If you are still unhappy and want to make a formal complaint, please contact Charlotte: firstname.lastname@example.org
What will happen to the results of the study?
The information you and the other people taking part give us will be analysed. We plan to publish the findings within around two years.
Will I be able to see the results?
When you consent you will be asked whether you would like a copy of the results. If yes, we will send these out to you when they are ready. If you don’t want to consent but still want to see the results, please email Hannah: email@example.com.
How will my data be kept?
Information we collect from you will be stored securely on password-protected computers, and be identified by a code, rather than your name. It will be kept for 10 years, and then destroyed. The only people who will have access to it will be the researchers who have been approved to work on this study. Once it has been completely anonymised (so you could not be identified at all) the ‘raw data’ would be available to others, for example university examiners and other researchers.