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FAQ

Type 1 diabetes (T1D) is a life-long condition where the immune system destroys part of the body (the pancreas) which makes the chemical insulin. Insulin is needed to control blood sugar levels. Treatment involves life-long insulin replacement by injection or insulin pump.

Type 1 diabetes antibodies, also called islet autoantibodies (IAb), are markers found in the blood which indicate that an individual is more likely to get T1D. They can be found in the blood months or years before symptoms of T1D appear.

If two or more T1D antibodies are found, this shows that your child is already in the early stage of T1D, although there may be no symptoms for months or years. If your child has normal blood glucose levels (this is called normoglycaemia, or stage 1 T1D), there is an 80%–90% chance of your child needing insulin before the age of 18 years and 100% during their lifetime. If your child already has abnormal blood glucose levels (this is called dysglycaemia, or stage 2 T1D), the chance of them needing insulin is around 75% over the next 5 years. Less is understood about the natural history of being IAb positive in adults, and we hope this study will help us understand more.

Children with only one IAb are at risk of T1D and are less likely to develop T1D (around 10-15%).

We have developed a registry of children and adults with T1D antibodies to:

  • Keep in contact with people with T1D autoantibodies – we will tell you about any treatments available on the NHS that could delay or prevent the need for insulin, or opportunities to take part in research, including trials to delay T1D
  • Learn from you what it is like to have markers called T1D antibodies, to help develop better resources to support people
  • Collect data on if, and when, insulin is needed
  • Understand whether people with T1D antibodies use NHS services more than others; for example, because of being anxious about developing T1D and the need to start insulin

  • Individuals aged 6 months to 70 years
  • A positive test for one or more islet (diabetes) autoantibodies
  • Living in the UK
  • Not taking insulin (but may have done in the past)

Please contact the UKIAB Registry team on 07765 932065 or email ukiab@ndm.ox.ac.uk and we will be happy to help.

If you have been diagnosed with clinical type 1 diabetes and are taking regular insulin you are not eligible to take part.

Yes, as long as you are not taking regular insulin.

  • We will collect some information from you at the start of the study, such as medical and family history, your antibody test result, how you found out about the study, and your contact details. Your contact details will allow us to let you know about any new treatments approved or drug trials to delay type 1 diabetes, and any other research studies. Taking part in any future studies is entirely voluntary.
  • We will contact you once a year to complete a brief questionnaire about your health service usage.
  • We will be inviting some of the people who are eligible to join the registry to take part in an interview study to understand what it is like for people to live with a positive antibody result, and be at risk of type 1 diabetes. This will inform future healthcare recommendations.

As part of being in the registry, we will contact you if opportunities to take part in research become available. Taking part in any future studies is optional and saying no to a study will not affect your ongoing inclusion in the registry.

Home test kits are free and are sent out via 2nd class post.

If you need help, please contact the UKIAB team on ukiab@ndm.ox.ac.uk or telephone 07765 932065.

Test kits are sent out via 2nd class post. We will let you know when we have posted it to you. If you have not received the kit after 2 weeks, please contact the UKIAB team at ukiab@ndm.ox.ac.uk and we will send a replacement.

We do not currently offer testing for family members, however, the following screening studies can provide testing:

If you have provided us with an email address, the results will be sent to you via email. Otherwise, we will send a letter to your home address.

Results are expected 6-8 weeks from the time the sample is received by our lab.

  • Clinical care (provision varies throughout the UK): Your GP can refer you to your local hospital for follow up.
  • Research studies: The ARAD and INNODIA studies can offer follow up for individuals with one or more islet autoantibodies. Follow the links below to check their eligibility criteria:

Please see the data privacy statement on our website. Further information about how your data is used within the study can be found within the participant information sheet.

If you have consented to this, your GP will be informed of your participation in the study, and (if applicable) the results of your confirmatory antibody test. If you are under a hospital team, please give them a copy of your antibody results.

If you have concerns, or think you may be developing symptoms of type 1 diabetes, you should book an appointment urgently to see your GP. It may be helpful to bring a copy of your type 1 diabetes antibody test results letter to your appointment with you.

If you develop type 1 diabetes, this will not affect your inclusion in the registry. We would like to follow up with you as we would any other registry participant, as outlined in the participant information sheet.

If you wish to withdraw from the study, you can do this at any time and without needing to give a reason. Please contact the study team on ukiab@ndm.ox.ac.uk.