Case study: Innovative diabetes screening programme helps family prepare for the future

A simple blood spot test alerted five year old Freddie’s family to the almost lifetime certainty of him developing Type 1 diabetes.

His mum Kim heard about the ELSA study on BBC Breakfast, and as she has the condition herself, she wanted to get both of her children checked.

The research is being carried out to try and support children at risk of developing type 1 diabetes and to understand more about diabetes and those at risk. Type 1 diabetes is a serious condition where the blood glucose level is too high because the body cannot make the hormone insulin.  By identifying children at risk, they can be prevented from becoming too unwell and start receiving treatment sooner.

Kim said: “I was diagnosed while pregnant, but it wasn’t gestational diabetes as it carried on after I gave birth. I signed up to the study online for the home testing kit, as I wanted to know what the chances were of both children getting it later in life.  I never expected either of them to be positive, but Freddie was and his sister Poppy wasn’t.”

Having completed the home test and submitting the results, Kim was contacted by the study team and the pair travelled to London for antibody tests which showed that Freddie is almost certain to develop Type 1 diabetes later in life. 

Kim added: “Freddie was only three years old at the time, one of the youngest ever to take part in the study.  He now has regular glucose tests which show his blood sugar is increasing and I am really glad we got involved, as we know now, and can prepare ourselves. 

“It’s helped us to keep ahead of the game and with the help of our GP, we will be able to track when he needs insulin. We talk to Freddie about it all the time, so he won’t have any nasty surprises in future, and he is really good at sitting for all the tests.

“I’ve told all my friends and family about ELSA because I’m really keen that everyone at risk of diabetes has the best chance of finding that out. This has been a really positive experience and I would definitely take part in research again.”  

Dr Lauren Quinn, Clinical Research Fellow, ELSA Study, said:  “Freddie is a great example of how our research can help children and their families.  The test is really quick and simple to do at home, and we are still recruiting, so I encourage anyone with diabetes in the family to sign up.”

Kim added: “Dr Quinn has helped and supported us through the whole process and I would really like to thank her.”

Notes to Editors:

The ELSA study - Early Surveillance for Auto-immune Diabetes - screens children between the ages of three and 13 to find those at risk of developing insulin-dependent type 1 diabetes and offers education and support to at-risk children and their families. It is being run in the region by the NIHR Clinical Research Network West Midlands and is the largest antibody screening programme for type 1 diabetes in the UK. 

The study aims to screen 20,000 children before the end of the study in February 2025 by working with schools and GP surgeries across the UK. It is estimated that three in every 1,000 children will test positive. 

Following Freddie’s participation in ELSA, the family is now involved with the Innodia diabetic research group.

ENDS

For further information contact:  Claire Hall, Communications Lead on 07775 800227.