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New UK-first trial to screen children for type 1 diabetes opens for recruitment

14 November 2022

A group of children wearing JDRF t-shirts

What is this trial?

A trial screening programme for type 1 diabetes that could transform the way the condition is identified and managed in its earliest stages, opens for recruitment today. The first programme of its kind in the UK will identify children at high risk of type 1, laying the groundwork for the development of any potential UK-wide screening programme.

Launching on World Diabetes Day (Monday 14 November 2022), ELSA (EarLy Surveillance for Autoimmune diabetes) will aim to recruit 20,000 children, aged 3-13 years, to assess their risk of developing type 1 diabetes.

What is the ELSA research study?

Co-funded by JDRF, ELSA will provide crucial insights into practical and effective ways to screen large numbers of children in the UK. It will also support those at high risk and their families to ensure the earliest, safest diagnosis possible. Those identified as high risk could also gain access to clinical trials testing the newest innovations in type 1 diabetes treatment, which could prevent or delay the condition.

How will researchers identify children at risk of type 1?

The national research team is led by researchers at the University of Birmingham, Parth Narendran, Professor of Diabetes Medicine, and Dr Lauren Quinn, Clinical Research Fellow. They will assess children’s risk of type 1 diabetes through a combination of finger prick and venous blood tests.

The team will test for markers in the blood, called autoantibodies – tools used by the immune system to earmark insulin-producing cells for destruction. Autoantibodies are associated with the development of type 1 diabetes, and can appear in the blood years, or sometimes decades, before people begin to experience any symptoms.

Risk of type 1 increases with the number of different autoantibodies present in the blood. Those with two or more autoantibodies have an 85% chance of developing type 1 diabetes within 15 years, and it is almost certain that they will develop the condition in their lifetime.

What are the benefits of screening?

Children found to be at risk and their families will be offered support and education – including information on symptoms and management – to help prepare them for the diagnosis of type 1 diabetes. Families will also be given the opportunity to be followed up in the long-term to enable closer monitoring and potentially start insulin treatment sooner.

While type 1 diabetes is currently managed using insulin, there are new immunotherapy treatments on the horizon that could prevent or delay the condition. Children found to be at high risk could be invited to take part in research testing these treatments. One such treatment, teplizumab, which has been found to delay a diagnosis of type 1 diabetes by up to three years, is currently being reviewed for use in the UK and the US.

Reducing diagnosis in DKA

Research in Europe and the US has found that the extra support and monitoring screening programmes can offer dramatically reduces the risk of being diagnosed in diabetic ketoacidosis (DKA). DKA is a potentially fatal condition that requires urgent hospital treatment.

Professor Narendran and Dr Quinn said: “Screening children can reduce their risk of DKA at diagnosis around five-fold and can help them and their families settle into the type 1 diagnosis better. We know the value of identifying people at risk of type 1 diabetes and we have the tools to do so – now we need to understand how best to implement them in the UK.”

Why get your child screened for type 1?

Jayne and Mike Fairclough, from St Helen’s, have two young daughters, Libby and Lottie. Libby was diagnosed with type 1 diabetes in 2019, aged 3. Jayne said: “When Libby was diagnosed with type 1 diabetes, our world was turned upside down. Looking back all the signs were there, but we knew nothing about diabetes and never thought it would be that.

“If we had known Libby was at risk of type 1 diabetes, we might have spotted the signs sooner and been able to prepare ourselves for her diagnosis. Screening for type 1 diabetes could help families avoid the shock diagnosis that we went through. If our youngest daughter, Lottie is also at risk, we’d want to know. The ELSA study gives us so much hope for a better future for children who are at risk of type 1 diabetes.”

Future national screening programme

Through a series of interviews with families and healthcare professionals, the team aims to understand the most effective way to deliver a future screening programme. These insights will be critical in making the case for widespread routine screening for type 1 diabetes in the UK.

Professor Narendran and Dr Quinn said: “As general population screening programmes for type 1 diabetes emerge around the world, we need to explore how best to screen children here in the UK. The ELSA study will ask important questions about the best ways to recruit and will explore the experiences of families who take part.”

Funded by generous JDRF supporters

The ELSA study team said: “We are extremely grateful to our funders, JDRF and Diabetes UK. We hope ELSA will lead to the roll-out of a type 1 diabetes early detection programme for children in the UK and encourage families with children at a suitable age to consider taking part.

Sign up for ELSA

Find out how your child can take part in the ELSA study and sign up by visiting the ELSA website.

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