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Somerset family take part in research looking to prevent lives lost to Type 1 diabetes - 20 May 2019

Somerset family take part in research looking to prevent lives lost to Type 1 diabetes - 20 May 2019

Two Somerset brothers have taken part in a study looking to prevent Type 1 diabetes.

Thirteen-year-old James and 11-year-old Tom Lorimer, who live in Taunton, decided to take part in a diabetes research study after watching their grandma live with Type 1.

They have shared their story as part of the Be Part of Research campaign, developed by the National Institute for Health Research, which launches today on International Clinical Trials Day. They hope to encourage others to take part in vital research in the future.

James said he decided to take part in the TrialNet study, an international study for relatives of people with Type 1 diabetes, after watching his 74-year-old grandma endure hypos and complications as a result of her condition.

As part of the study, screening is offered free to relatives of people with T1D to evaluate their personal risk of developing the disease. This unique screening can identify the early stages of T1D years before any symptoms appear. It also helps researchers learn more about how T1D develops and plan new studies exploring ways to prevent it.

“I found out about the study from my Mum, Claire, who’s a research nurse at Musgrove Park Hospital,” said James. “I wanted to be able to help scientists get an understanding of Type 1 diabetes and also to help my grandma. Getting involved wasn’t hard at all - basically I sat in a chair and then they took my blood and tested it to see if I was at risk of developing diabetes. I learnt how important research is for scientists and it made me feel good to help.”

James’s younger brother, Tom, said he got involved in the study because he believes it’s important to help scientists find new treatments for conditions such as diabetes.

“When my mum told me about the study I was really interested and wanted to help,” he said. “I only had to have a blood test, which did hurt a little bit, but it was over quickly. I know how important research is in helping scientists develop new treatments for things like diabetes and that’s why I wanted to do it.”

Both James and Tom helped with the Pathway to Prevention screening phase of the TrialNet prevention study. They both screened negative for the risk of developing diabetes.

Type 1 diabetes is a serious, lifelong condition where your blood glucose level is too high because your body can't make a hormone called insulin. People with the condition need daily injections of insulin to keep their blood glucose levels under control. Relatives of people with T1D are 15 times more likely to develop the disease than the general population.

Claire, Tom and James’s mum, has said one of the drivers behind encouraging her sons to take part was to see if her children were at risk of developing the condition.

“My mother has lived with Type 1 diabetes for about 50 years now and we’ve all seen how it has taken its toll on her. She sometimes has hypos which upsets both of my boys as she can get very confused, and she attends outpatients frequently to monitor her conditions.

“Type 1 diabetes is a dangerous condition if it’s left undiagnosed and so, as a mum, when I first found out about this study I was obviously very keen to get my sons involved. As a mum you want to do everything and anything to protect your children and so I knew that by getting them enrolled in the study we would be able to find out what their chances were of developing the condition and then be able to act upon that. I think anyone would want to know if their children were at risk.”

Currently there is no routine screening available on the NHS for relatives of people with Type 1 diabetes.

“My eldest son particularly feels very strongly about doing what he can to help people with type 1 diabetes as he sees what his grandmother goes through each day, and of course there are no days off from thinking about her condition,” said Claire, who also took part in the study.

“I am very proud of both of my boys who were so keen to help in their way, to help prevent people getting type 1 diabetes. I would like to think that the research will go some way to understanding the onset of diabetes and maybe preventing it. Research is the only way we can improve treatments, improve quality of life and for my family, hopefully one day prevent type 1 diabetes.”

The NIHR’s Be Part of Research campaign encourages patients, carers and the public to get involved in research.

Dr Michael Gibbons, Clinical Director for the NIHR CRN SWP, said: “Research is important because it allows us to solve the challenges in health and social care. Compelling evidence shows that patients treated within the context of clinical trials generally have improved outcomes and experiences. Research active organisations also deliver better quality care. Thanks to patients such as James, Tom and Claire who take part, our researchers are constantly learning how to deal more effectively with a range of health conditions, how to improve the lives of many people and supporting improvement in the way in which we deliver care, not only locally but globally.”

To find out what studies are taking place in your area visit www.bepartofresearch.uk