Diabetes screening trial for children opens in Northern Ireland

A diabetes screening trial for children has been extended to Northern Ireland.

The programme, which aims to identify those at high risk of developing type 1 diabetes in the future, has been described as the first of its kind for the UK.

Type 1 diabetes is a serious and lifelong autoimmune condition which affects almost 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 trial, first launched in England, Scotland and Wales in November 2022, is set to 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.

It is funded by Diabetes UK and JDRF and Elsa (Early Surveillance for Autoimmune diabetes) and aims to recruit 20,000 children, aged three to 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 one in 100 children will require follow-up venous blood testing, available at the Southern Health And Social Care Trust.

The testing looks 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.

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 offered the opportunity to be followed up in the long term to enable closer monitoring and potentially to 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 through Elsa could be invited to take part in research testing these treatments.

Edelle Irwin, whose six-year-old son Zach is taking part in Elsa, said she is relieved the trial is now available in Northern Ireland.

It comes after another son, Shane, now 16, was diagnosed with type 1 diabetes when he was seven.

“When my son Shane was rushed to hospital and diagnosed with type 1 diabetes, we had no idea what to expect,” she said.

“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 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,” they said.

“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, described the trial as a significant step.

“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,” she said.

“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.”

Rachel Connor, director of research partnerships at JDRF UK, welcomed the expansion of the study to Northern Ireland.

“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,” she said.

“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 rollout of future immunotherapies to slow the progression of type 1, such as teplizumab.”

For further information, visit elsadiabetes.nhs.uk