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UK-first trial to screen children for type 1 diabetes now available in Northern Ireland

Enda playing football - announcing ELSA in Northern Ireland

We’re pleased to announce that children in Northern Ireland are now eligible for a trial screening programme that will identify those at high risk of developing type 1 diabetes in the future.

Funded by Diabetes UK and JDRF, ELSA (EarLy Surveillance for Autoimmune diabetes) was first launched in England, Scotland and Wales in November 2022.

The study aims to recruit 20,000 children, aged 3-13 years, to assess their risk of developing type 1 diabetes through at-home finger-prick blood tests. Home testing kits are now available to families throughout Northern Ireland.

Around 1 in 100 children will require follow-up venous blood testing, available at the Southern Health and Social Care Trust.

The ELSA study is the first of its kind for the UK which will lay the groundwork for the development of a potential future UK-wide screening programme, transforming how type 1 diabetes is identified and managed in its earliest stages.

Identifying people at high risk of type 1 diabetes through ELSA

ELSA Test Kits

Type 1 diabetes is a serious and lifelong autoimmune condition affecting nearly 9,000 people in Northern Ireland.

It is caused by an immune system attack on the insulin-producing cells of the pancreas, meaning they can no longer make insulin, which results in high blood sugar levels.

The ELSA research team are able to identify people at high risk of type 1 diabetes by testing 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 diabetes increases with the number of different autoantibodies present in the blood. Children 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.

Find out how your child can take part in the ELSA study.

Understanding the signs and supporting an earlier, safer diagnosis

Children found to be at risk and their families will be offered support and education – including information on symptoms of type 1 diabetes and management – to help prepare them for the diagnosis of type 1 diabetes.

Families will also be offered the opportunity to be followed up in the long-term to enable closer monitoring and potentially to start insulin treatment sooner. 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) – a life-threatening condition.

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 through ELSA 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, was approved in the U.S. last year and is currently under review in the UK.

Preventative treatments for type 1 diabetes can only be effective when combined with screening programmes to identify those at risk. By offering vital insights that could make routine, widespread screening for type 1 diabetes a reality in the UK, ELSA could be critical to help unleash the benefits of teplizumab if approved here.

Edelle Irwin, whose 6-year-old son is taking part in ELSA, said:

“When my son Shane was rushed to hospital and diagnosed with type 1 diabetes, we had no idea what to expect. Seeing my seven-year-old hooked up to all those machines, surrounded by nursing staff in a hospital bed will be forever etched in our minds. If we had recognised the symptoms earlier, that day would not have turned into the emergency situation it was.

“Now that ELSA is available in Northern Ireland, I’m relieved to be getting my youngest son screened for type 1. He also has autism and screening would allow us to plan in the case of a diabetes diagnosis and management, given the extra challenges his sensory issues may cause.

"I would urge other families in Northern Ireland to get their children screened too so that they have the tools to keep their children safe and possibly avoid a similar situation to us.”

Parth Narendran, Professor of Diabetes Medicine, and Dr Lauren Quinn, Clinical Research Fellow at the University of Birmingham, said:

"The ELSA team are delighted to open the ELSA study in Northern Ireland. Over 9,000 children from across England, Scotland and Wales are already part of the study. ELSA aims to screen 20,000 children to find out their risk of type 1 diabetes. 

"Screening and monitoring help prevent emergency presentations with type 1 diabetes. Families identified at risk are offered education and participation in monitoring programmes, the opportunity to participate in clinical trials and potentially also therapies to delay the onset of type 1 diabetes if these are licensed in the UK.”

Tina McCrossan, National Director at Diabetes UK Northern Ireland, said:

“We are extremely proud to support this ground-breaking research in partnership with JDRF – it marks such a significant step in supporting families across Northern Ireland to get a head start on type 1 diabetes through the earliest and safest diagnosis possible.

"Unfortunately, evidence from England and Wales highlights that over 25% of children aren’t diagnosed until they are in DKA, a potentially fatal condition that requires urgent hospital treatment. Equipped with the knowledge of their child’s risk and the signs and symptoms to look out for, parents could be less likely to face this highly distressing experience.

“We have seen some incredible developments in immunotherapy treatments in the US, ushering in a new era where the root cause of type 1 diabetes can be tackled to hold off its development. Having this same preventative treatment licensed in the UK, coupled with ELSA to identify those at risk who could benefit from the treatment, could be entirely life-changing for so many families.”

Rachel Connor, Director of Research Partnerships at JDRF UK, said:

“We are delighted that the ELSA study is expanding to Northern Ireland, building on the incredible success of the screening programme in the rest of the UK. The dedicated research team will ensure children in Northern Ireland at risk of type 1 and their families are supported and monitored to give them the best possible start in their journey with the condition.

“At JDRF, we believe it is vital that everyone in the UK has access to the latest advances in type 1 diabetes research. This important move by the ELSA study paves the way for children in Northern Ireland to be included in the testing and roll out of future immunotherapies to slow the progression of type 1, such as teplizumab."

Read Claire's story about having her children screened for type 1 diabetes. 

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