Children to receive type 1 diabetes screening on NHS after landmark study

NHS pre-diabetes clinics for children are to be set up following a significant study that validated the use of finger-prick blood tests for early detection of the condition.

This "landmark" research confirmed the viability of screening for type 1 (T1) diabetes before symptoms manifest.

The new findings indicate that children can be identified during the very initial stages of type 1 diabetes, potentially paving the way for a potential screening programme in the future.

Experts suggest this development could mark a "step change" in how the disease is diagnosed and managed.

Currently, a “too many” children with type 1 diabetes are only diagnosed during a medical emergency.

Early identification would allow these children to access crucial treatments, which could postpone the necessity for insulin therapy for several years.

The Early Surveillance for Autoimmune Diabetes (Elsa) study, led by the University of Birmingham and co-funded by Diabetes UK and Breakthrough T1D, was launched to assess the feasibility of screening in the UK.

The results from the first two years of the study have been published in correspondence published in The Lancet Diabetes and Endocrinology.

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UK children aged three to 13 without type 1 diabetes were invited to participate and they provided a finger print blood sample which was checked for antibodies which have previously been found to be present in pre-symptomatic patients.

Children identified as potentially having a risk of T1 diabetes were invited for further blood tests or sugar tolerance tests.

Overall 17,283 tests were analysed and more than 200 children were found to be at risk or have markers in their blood that indicate risk of T1D.

The next phase of the study, Elsa 2, will involve more children recruited from a wider age range, from two to 17.

This part of the study will support NHS clinics for four years at each of the 20 study sites across the UK.

The clinics will help support and educate families where children are found to be at risk of, or have early, type 1 diabetes.

Staff will also be able to help children as they move on to insulin treatment.

If approved by the NHS’s spending watchdog, some youngsters may have access to a new type of treatment – teplizumab – which can help delay the need for insulin treatment and was approved for UK use by the medicines regulator last year.

Lead researcher Parth Narendran, professor of diabetes medicine and honorary consultant physician at the University of Birmingham, told the Press Association: “This is a landmark study for the UK, it shows for the first time that we can identify those people at an early stage, prevent emergency diagnoses.

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“It’s giving families time to prepare.”

On the new clinics he said: “Once people have been diagnosed with early type one diabetes before they need insulin, but we know that they’re going to move on to insulin. They need support.

“So the idea is that they would get regular support and advice on when to test their glucose, what symptoms to watch out for, just so they can start this insulin early and in a timely fashion.”

He went on: “Once they’re on insulin, they’ll just flow naturally, with the same healthcare team, into the normal type one clinic. So it should be a seamless transition and a much gentler introduction to insulin treatment.”

In the future there could be the possibility of offering treatments such as teplizumab, and others that are in the pipeline, “so they don’t need insulin therapy in the long term and we keep them in the very early stage of type 1 diabetes without insulin requirements”, he added.

“It’s a massive step change,” he said.

Up to 400,000 people in the UK have type 1 diabetes – about 8 per cent of people with diabetes.

About a quarter of children with type 1 are only diagnosed when they reach an emergency situation.

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Prof Narendran said a new screening programme could, in the future, prevent children from “crash landing” into a diagnosis.

Amy Norman, 44, from the West Midlands, was diagnosed with type 1 diabetes at the age of 13.

Through the Elsa study it was found that her 11-year-old daughter, Imogen, is in the early stages of type 1 diabetes.

She was the second child in the UK to access the immunotherapy drug teplizumab.

“Being part of the Elsa study has helped us as a family to prepare for the future in a way we never expected,” said Ms Norman.

“When I was diagnosed, I had no warning and ended up quite poorly in hospital with diabetic ketoacidosis.

“Being forewarned is being forearmed. She was always going to develop type 1 diabetes, but through Elsa we’ve been able to slow down the process and prepare – we know what is coming, but we’re not scared.”

Dr Elizabeth Robertson, from the charity Diabetes UK, said: “For too many families a child’s type 1 diabetes diagnosis still comes as a frightening emergency, but that doesn’t have to be the case.

“The Elsa study is generating the evidence needed to make type 1 diabetes screening a reality for every family in the UK.”

Rachel Connor, from Breakthrough T1D, added: “This is about rewriting the story of type 1 diabetes for thousands of families – instead of a devastating emergency, we can offer time, choices and hope.

“By finding children in the earliest stages, we’re not just preparing families, we’re opening the door to treatments that can delay the need for insulin by years.”

Italy was the first country to roll out a national screening programme and other countries are looking to introduce screening for the condition.