UK-first trial aiming to screen 20,000 children for type 1 diabetes opens for recruitment in Scotland
14th November 2022
Blood tests will identify children in Scotland likely to develop type 1 diabetes, allowing earlier, safer diagnosis
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 with Scottish children eligible to take part.
The first programme of its kind in the UK will identify children at high risk of type 1 diabetes, laying the groundwork for the development of any potential UK-wide screening programme.
Launching on World Diabetes Day (Monday 14 November), 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.
Funded by Diabetes UK and JDRF, ELSA will provide crucial insights into practical and effective ways to screen large numbers of children across Scotland and the UK, and 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.
Type 1 diabetes is a serious and lifelong autoimmune condition affecting almost 35,000 people in Scotland.
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. Rapid diagnosis of type 1 diabetes is essential to avoid life-threatening complications. However, over a quarter of children aren’t diagnosed with type 1 diabetes until they are in diabetic ketoacidosis (DKA)2, a potentially fatal condition that requires urgent hospital treatment.
The national research team 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 –which can appear in the blood years, or sometimes decades, before people begin to experience any symptoms.
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 could be invited to take part in research testing these treatments.
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.
Lynsey Flynn, from Glasgow, watched her son Sam (9) deteriorate over the course of months, and says knowing he was at risk of type 1 diabetes would have made all the difference.
“Two weeks before he was diagnosed, Sam was skin and bone. We’d been back and forward to the doctor. He’d been being sick, and vomiting – which I hadn’t realised can be a symptom of diabetes.
“We thought he had stomach cancer and had asked to be referred to the hospital.
“He had this smell of nail polish, which we know now must have been the ketones. He was borderline DKA when he got to hospital.
“Even though you’ve lived with the condition, when medical professionals tell you it’s something else, you believe them.
“If we’d known through this study then I’d have been able to go to the doctor and say, ‘Look, can we check for this?’ I’d have had a checklist of symptoms to look for. He’d have got diagnosed months before, and we wouldn’t have been worrying about all these horrible things that could have been wrong with him.”
Parth Narendran, Professor of Diabetes Medicine, and Dr Lauren Quinn, Clinical Research Fellow, 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.”
Dr Elizabeth Robertson, Director of Research at Diabetes UK, which is co-funding the study, said:
“We’re extremely proud to fund this pioneering research programme in partnership with JDRF. Identifying children at high risk of type 1 diabetes could put them and their families on the front foot, helping ensure a safe and soft landing into an eventual diagnosis, avoiding DKA and reducing the risk of life-altering complications.
“Every day without type 1 diabetes counts. Extra years without the condition means a childhood no longer lived on a knife-edge of blood sugar checks and insulin injections, free from the relentlessness and emotional burden of type 1 diabetes.”