Date: 20 May 2019
A Milton Keynes mum is volunteering her infant daughter for an NHS trial to try to prevent her from getting type 1 diabetes like her older sister.
Chloe Phippard’s five-month-old daughter, Ava, will take part in a trial to see if daily doses of insulin powder can prevent infants from developing type 1 diabetes.
A linked study found Ava had a genetic risk of type 1 diabetes and she will now enrol on another trial to attempt to prevent the condition by using the powder.
Mrs Phippard, 24, whose first daughter Amelia was diagnosed with type 1 diabetes aged two, said: “I cried when I found out about the risk because I knew what Amelia had gone through I didn’t want Ava to go through that as well.
“I will do anything to prevent Ava from being diagnosed and doing the trial means I could give her a chance at living a normal life.”
Chloe, who has three children with husband Carl, 28, spoke ahead of today’s International Clinical Trials Day (20 May), an annual drive to encourage the public to take part in health research. This will be marked by a public information event at the entrance of Milton Keynes University Hospital from 10am to 3pm tomorrow (21 May).
This comes as a survey of 412 NHS research participants in Berkshire, Buckinghamshire, Milton Keynes and Oxfordshire found that 94 percent had a good experience of taking part and 92 percent would volunteer for another study.
Type 1 diabetes is a long-term condition where the body stops producing insulin, causing glucose levels in the blood to become too high. This can be life threatening and even with treatment can cause serious long-term health problems such as blindness, cardiovascular disease and stroke.
Mrs Phippard said of Amelia’s diagnosis in 2015: “I was quite shocked. I didn’t think it would happen to us because it doesn’t run in our family or anything, so it wasn’t something I really thought about.”
People with type 1 diabetes need doses of insulin through injections or a portable device worn on the belt which delivers it through a tube placed under the skin. Amelia uses this and another device to alert her parents to when her blood sugar levels are low.
Mrs Phippard said of when Amelia’s blood sugar levels are low: “She’ll get really grumpy at you, she’ll get tired, she gets slurred speech sometimes. You can just see it in her face and her eyes and you know instantly that her levels have dropped.”
Mrs Phippard, also mother to one-year-old Alice, said: “Amelia can’t go to birthday parties or around a friend’s house for dinner without me or her dad there because someone has to be trained in how to give her insulin. There’s just certain things that she can’t really do that other kids do and wouldn’t even think anything of.
“Sometimes she’ll ask me if she’ll have to have insulin when she’s older and I have to say yes, you’ll be having it forever. She’s never going to live a life without diabetes and it’s all she’s ever known.”
Mrs Phippard learned of the INvestigating Genetic Risk for type 1 Diabetes (INGR1D) study at Milton Keynes University Hospital last August, when she was five months pregnant.
When Ava was born in December, a sample of her blood - which is already collected from newborns for screening tests - was analysed for genetic risk of type 1 diabetes, with her mother’s consent.
About one percent of children will have genes which put them at a high risk (greater than 10 percent) of developing type 1 diabetes. After the test revealed Ava had these genes, Mrs Phippard was invited to take part in the Primary Oral Insulin Trial (POInT trial) to see if daily doses of insulin powder can prevent type 1 diabetes.
Participants on the trial are given insulin powder or a placebo (dummy drug), to compare the two. Neither the researchers nor participants are told which they will receive, to prevent bias. Parents are asked to give their children the powder until they are three. They will have visits from the research team for six years to monitor the child’s health.
It is hoped that the insulin can train the immune system to tolerate the body’s own insulin to prevent the onset of type 1 diabetes. There is currently no way to prevent the disease. Ava will begin taking the powder in her food once she is old enough to eat pureed foods.
Mrs Phippard, a healthcare assistant at the hospital, said: “If I can prevent another child from getting type 1 diabetes, that would be amazing. If the trial works then that’s great because no other kid or parent will have to go through what we went through. I wouldn’t wish this on anyone.
“Even if it turns out Ava got the placebo, I feel it’s better than not doing anything at all. Knowing that someone will be around regularly just to check on her just put my mind at ease.”
Chloe was recruited by the study team at Milton Keynes University Hospital, led by consultant Ms Premila Thampi and research midwives Edel Clare and Joanna Mead.
Researchers hope to screen 30,000 babies born in Berkshire, Buckinghamshire, Oxfordshire and Milton Keynes by 2021, to enrol 100 babies at increased risk of type 1 diabetes for the POInT study.
The studies are part of the Global Platform for the Prevention of Autoimmune Diabetes (GPPAD), funded by the Leona M. and Harry B. Helmsley Charitable Trust and led by Helmholtz Zentrum München (German Research Center for Health and Environment). In the UK, they are led by the University of Oxford with support from the National Institute for Health Research (NIHR).
Professor Matthew Snape, the POINT study’s chief investigator, said: “It’s very exciting to be involved in a project that is looking to prevent type 1 diabetes, and we are enormously grateful to families such as the Phippards for their willingness to take part.
“Without the involvement of members of the public in studies such as this then medicine would not move forward – we are greatly in their debt.”
Figures released today show 870,250 people took part in 6,106 NIHR-backed research studies across England in 2018/19, up from 725,333 people in 5,804 studies in 2017/18.
Patients are encouraged to ask their doctor about research opportunities and search for studies seeking volunteers at www.bepartofresearch.uk.