I have no family history of diabetes, why do you want to test my blood sample?
More than 90% of people who develop type 1 diabetes do not have a relative with type 1 diabetes.
The markers of type 1 diabetes (islet autoantibodies) usually appear in the blood years before clinical symptoms appear. An aim of this study is to work out how many adults with no family history will develop type 1 diabetes.
I have a blood relative with type 1 diabetes. Can I participate?
Yes – you can, we welcome your participation. We will collect data about any family history of type 1 diabetes on our consent survey.
I have type 2 diabetes; can I take part?
Yes – you can, we welcome your participation. We know that some people diagnosed with type 2 diabetes have islet autoantibodies, particularly GADA. If we identify islet autoantibodies risk markers for type 1 diabetes you may wish to share T1DRA test results with the clinical care team looking after your diabetes treatment.
Please do not make any changes to your treatment without speaking to your clinician.
Can I have my children tested?
No, not as part of this study but there is an ongoing study testing children between the ages of 3 and 13 years called The ELSA Study their website is: The ELSA Study (elsadiabetes.nhs.uk)
What samples and information will you be collecting?
All samples are collected using our home kits that contain full instructions and freepost return packaging using an ordinary post-box.
Capillary blood collected by finger prick blood is required for Islet autoantibody testing (identification of risk markers).
A mouth swab and *urine sample (*addition of urine for those with 2+ islet positive markers) will be requested for people who test positive for islet autoantibodies.
We will ask for your contact information, demographic details such as age, sex at birth, ethnicity, relevant medical conditions and whether you have any family history of type 1 diabetes.
How will I receive my islet autoantibody result?
Adults who are negative: The vast majority of adults tested (>97%) will not have a positive islet autoantibody result and they will be notified by SMS message.
Adults who are positive: A research nurse will contact those people and a confirmatory sample will be requested and further finger prick kit sent. This is routine in research as autoantibody levels can fluctuate.
Confirmation of a positive result (on two samples) will be confirmed by telephone, followed by letter which can be shared by the participant with their GP/clinical care team if they wish.
What are the benefits of participating in T1DRA?
For the scientific community, this study will tell us for the first time the number of people in the general adult population at risk of type 1 diabetes. We hope that by providing islet autoantibody results and guidance about future risk, this should help prevent symptoms being overlooked and becoming unwell with a delayed or emergency diagnosis of type 1 diabetes.
If I want to withdraw from the study, how do I do this?
Should you wish to withdraw from the study, you can do this at any time without having to give a reason. Please email firstname.lastname@example.org to let us know.