UK Islet Autoantibody Registry
This registry is for people in the UK, aged 6 months to 70 years, who have specific markers in their blood called islet autoantibodies. These markers mean you might be at a higher risk of developing type 1 diabetes. We want to learn more about what it's like to live with this risk, what information and support you need, and if you use NHS services more often. We'll use this information to help create better care guidelines for people at risk. You might also be told about potential treatments and other research studies later on.
At a glance
What is this study about?
Type 1 diabetes is a long-term health condition where your body's immune system mistakenly attacks and destroys the cells in your pancreas that produce insulin. Insulin is a vital chemical that helps control your blood sugar levels. Without it, blood sugar can get too high, which can be very serious. People with type 1 diabetes need to take insulin, either by injection or through a pump, for the rest of their lives.
We know that type 1 diabetes doesn't suddenly appear. It often develops in stages, starting with a period where there are no symptoms. This stage can last for months or even years before a person starts to feel unwell. During this early stage, certain markers called islet autoantibodies (IAb) can be found in the blood. If a child has two or more of these markers, there's a very high chance (80-90%) they will develop type 1 diabetes within 15 years, and almost certainly in their lifetime. If they only have one marker, the risk is much lower. We don't know as much about how this works in adults, and this study aims to find out more.
The main goal of this research is to understand what it's like for people who are at risk of developing type 1 diabetes. We want to know what kind of information and support you find helpful, and if being at risk makes you use NHS services more, perhaps because you're worried. We'll work with patients and the charity Diabetes UK to use what we learn to create better guidelines for supporting people like you. By creating a registry of people with these markers, we can also compare our findings with other countries to better understand why some people go on to need insulin and others don't in the UK.
Key takeaways
- This is a UK registry for people at risk of type 1 diabetes.
- It aims to understand experiences and support needs for people with autoantibody markers.
- Data collected will help improve future care and policies.
- You might be informed about potential new treatments or other research.
- Your decision to join or leave is voluntary and won't affect your medical care.
Who may be eligible?
You might be able to join this registry if you are between 6 months and 70 years old and live in the UK. The most important thing is that a specific blood test has shown you have one or more of the islet autoantibody markers. These markers must have been confirmed by a specialist lab.
If you are 16 years old or over, you'll need to give your own permission to join. If you are under 16, a parent or guardian will need to give their permission for you. You also cannot be taking insulin injections regularly already.
If you have been living with a positive autoantibody result for at least six months, you might also be asked to take part in some interviews to share your experiences.
Could this study suit you?
Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.
- Am I between 6 months and 70 years old?
- Do I live in the UK?
- Have I had a blood test showing I have islet autoantibody markers (IAb)?
- Am I NOT currently taking insulin injections regularly?
What does participation involve?
If you decide to join the registry, it largely involves allowing researchers to collect health information about you. This information will help them understand more about people at risk of type 1 diabetes. You will also be told if there are any approved medicines in the UK that could help delay type 1 diabetes. You can also choose to be contacted about other research studies that are testing new ways to prevent or delay type 1 diabetes. The overall duration is ongoing as it's a registry to collect information over time.
Potential risks and benefits
Locations (1)
- University of OxfordVerified postcodeOxford, United Kingdom· Recruiting
Common questions
What are islet autoantibodies?
These are special markers in your blood that show your immune system might be starting to attack the cells in your pancreas that make insulin. Their presence suggests a higher risk of developing type 1 diabetes.
Will I have to take any medicine in this registry?
No, this registry is about gathering information. You won't be given any new medicines as part of this specific study.
What will happen with my information?
Your de-identified information will be used to understand what it's like to live with a risk of type 1 diabetes, what support you need, and to help researchers in the UK learn more about the condition.
Will joining the registry affect my usual medical care?
No, joining this registry will not affect the medical care you normally receive from your doctor or the NHS.
Can I leave the registry if I change my mind?
Yes, you can choose to leave the registry at any time without giving a reason. Your decision will not affect your medical care.
How to find out more
UKIAb Registry Manager
Always speak to your GP or specialist before deciding to take part in a study.
Interested in taking part?
Discussion
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