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Screening children for type 1 diabetes: The ELSA study

Project summary

It’s possible to identify people who are very likely to develop type 1 diabetes by looking for signs in the blood that indicate the immune system has started to plan an attack on the pancreas. Professor Parth Narendran is exploring how a programme to test children for these signs and find out their risk of type 1 diabetes would best work in the UK.

The ELSA study will screen 20,000 children using a simple blood test. Screening can help to make sure children have the earliest, safest diagnosis possible. And children found to be at risk could be eligible for trials of promising new treatments. ELSA will give us vital insights that could help lead to a routine, widespread type 1 diabetes screening programme in the UK.

Background to research

Type 1 diabetes develops when the immune system destroys the cells in the pancreas that make insulin. We know that the immune system’s attack begins long before someone develops symptoms and is diagnosed with type 1. With a simple blood test, it’s possible to spot very early signs of the attack and identify people who have a high risk of developing the condition in the coming months, years or decades.

Scientists do this by testing for markers in the blood called autoantibodies. Autoantibodies are used by the immune system to earmark insulin-making beta cells for destruction. They can appear can appear years, or sometimes decades, before you’re diagnosed with type 1 diabetes.

Risk of type 1 diabetes increases with the number of different autoantibodies found in the blood. If you have two or more autoantibodies, you have an 85% chance of developing type 1 diabetes within 15 years. And you have almost a 100% chance of developing the condition in your lifetime.

Excitingly, scientists have recently shown that a new immunotherapy drug can delay type 1 diabetes when given to people who have autoantibodies. And screening would allow us to identify those who have a high risk of type 1 and who could benefit from this pioneering treatment. At the moment, the UK doesn’t have a routine type 1 diabetes screening programme.

Research aims

Professor Narendran and his team will trial a UK-first programme to screen children for type 1 diabetes and find those likely to develop the condition, called the ELSA (EarLy Surveillance for Autoimmune diabetes) study. They will recruit 20,000 children, aged 3-13 years, across the UK. They’ll test for autoantibodies through a combination of finger stick and standard blood tests.

Depending on where they live, families can choose to have the finger prick blood test at home, at GP practices, schools, or alongside a regular childhood vaccination. The ELSA team will explore which of these screening approaches is most effective and practical, and check which work best for everyone, including families from different ethnicities and different economic backgrounds.

Children who are found to be at risk and their families will be given support and education on the symptoms to look out for, insulin injections, carb counting and hypos. And they’ll be closed monitored to help make sure they’re diagnosed as early and safely as possible, before dangerous complications develop. This extra time to prepare can help to put families in a more prepared position, and remove some of the shock and distress at the time of diagnosis.  

Children at high risk could also be eligible to take part in immunotherapy clinical trials, testing treatments that hope to delay or prevent their type 1 diagnosis. 

The ELSA team will speak to the families, healthcare professionals, and school staff involved in the study to gather their views on the screening process. They’ll also interview families who decided not to take part, to understand the reasons why. This will help researchers decide how best to design any potential wider screening programme that could be rolled out through the NHS in the future.

Potential benefit to people with diabetes

The ELSA study will give us crucial insights that could help to make screening for type 1 diabetes a reality in the UK, and offer hope of a better future for people who are at risk of the condition.

Identifying children at high risk of type 1 diabetes will help them to have a safe and soft landing into an eventual diagnosis, and dramatically reduce the risk of potentially life-threatening Diabetic Ketoacidosis (DKA) when they’re diagnosed.  

Ultimately, screening could transform how we manage type 1 diabetes in the UK, moving us from waiting until diagnosis to treat it, to striking earlier. The first immunotherapy for type 1 diabetes, which has been shown to delay the condition, is currently under review in the UK. A type 1 diabetes screening programme will be essential to identify those at high risk, and make sure such treatments reach as many people as possible who could benefit.

Find out how your child could take part in ELSA and sign up

This project is co-funded with JDRF. Diabetes UK has contributed £500,000.
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