Here are some frequently asked questions about the ELSA Study
No. Participation in this study is entirely voluntary and will not affect the routine healthcare you receive. You can also drop out of this study at any time, without providing a reason.
There is no requirement to have any knowledge of type 1 diabetes to participate in this study. We will guide you through the interviews and answer any questions you have about type 1 diabetes to aid your understanding.
Yes. If you have a child with type 1 diabetes, you can take still take part in the ELSA-1 study to tell us if you wish you had known before your child was diagnosed, and if you would want to know if any of your other children were at risk of type 1 diabetes in the future.
I know that I would not want my child to be tested or monitored for type 1 diabetes, should I still take part?
Yes, we will not be trying to change your mind. We simply want to hear your thoughts. Your views will help us to better understand what is and what is not okay for parents/carers and their families.
No. In Elsa-1, we want to talk to families about a possible testing and monitoring programme. ELSA-1 will lead onto ELSA-2, which is when we will be testing and monitoring children for type 1 diabetes. You can choose to be part of ELSA-1, or ELSA-2, or both, but ELSA-2 is not open until 2022.
You will require either a smartphone or telephone, a laptop or PC ideally with a camera, as well as a WIFI or internet connection. For the video interviews we will be using Zoom. The study team will guide you through how to use this software.
Yes, we will be audio-recording your interview and this will be stored in line with General Data Protection Regulation (GDPR) and only accessed by the research analyst. The interview audio will be recorded onto a secure encrypted digital recording software, which is in line with the University of Birmingham IT security policies and procedures and which adheres to the Data Protection Regulations 2018. The audio-recordings will only be accessed by members of the study team who are research ethics compliant and performing the analysis from your responses.
The study team will be there to support you with any technical difficulties. We will help you to set-up the video platform before your interview and because it is from your own home, we can always do another time if there are any issues.