Taking part in research - Billie's story

Billie tells us about her experience of taking part in research

Billie Clayton recently enrolled her newborn daughter to take part in the INGR1D2 study, which invites parents to genetically test their child for an increased risk of type 1 diabetes, allowing children identified as being at risk the opportunity to take part in a prevention trial. The study involves using routinely offered blood spots collected by the NHS as part of the 'heel prick' test taken a few days after birth, instead of taking an extra blood sample.

Type 1 diabetes affects 1 in every 250 children born in the UK every year. Recent studies showed that in children with an increased genetic risk of type 1 diabetes, the harmful immune system response leading to this disease often begins in the first months of life. The study aims to prevent the development of this immune reaction as early as possible; to prevent the root causes of the disease long before insulin dependency and clinical diagnosis.

We asked Billie about her experience participating in research:

How did you find out about the study?

I was approached by the research team while in the birthing centre after having my daughter.

What made you want to take part?

I have been a nurse for 10 years so I know how important research is in healthcare. At work, I regularly see results from the newborn screenings and how conditions can be picked up early. On a more personal note, my sister was diagnosed with cystic fibrosis as a young adult. Had the newborn screening been in place when she was a baby, it would've been picked up much sooner and she could've started treatment earlier. Knowing your child is at a higher risk of getting diabetes can't be a bad thing because you would be able to get support sooner.

What did taking part in the study involve?

I was given all the necessary information and signed the consent form. The sample from the newborn screening/heel prick test (which she was having anyway) was then sent on for further testing.

What's the experience been like?

The experience was really positive. The staff were all really friendly and knowledgeable.

What would you say to somebody who is unsure whether to take part in research?

I would say that taking part has the potential to change practice in the future and highlight children who may need additional support from health services. Yes, there is a small sample of blood needed, but they have this taken anyway and there are no additional procedures.

If you are interested in volunteering for health and care research, visit the Be Part of Research website to find out more about research studies taking place in your area.