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Shared experience

What it’s like being a parent contributor to research

Amanda Lepley, whose daughter has type 1, was a parent contributor for the ELSA Study, which is screening UK children for type 1 diabetes. Amanda tells us what it was like being a parent contributor.
JDRF supporters Amanda and Bella Lepley.

Amanda and her daughter Bella.

The role of a parent contributor to research

Being a parent contributor to the ELSA study involved several jobs at each stage of the project.

Supporting the funding application

Before the project even began, I was a co-applicant for the funding for the study. Being a co-applicant meant I had to read through and comment on the researchers’ application for joint funding from JDRF UK and Diabetes UK.

Designing the study website

I played a big part in helping design the website for the ELSA Study. This included the wording and graphics on the website as well as the consent form. I then test ran the website to make sure it all worked properly and feed back to the research team.

Testing the screening system

Once the study was up and running, I signed my three children who don’t have type 1 up for the ELSA study both to test them for type 1 and test the system for issues. Throughout the study, I had regular video calls with other parent contributors and the research team to discuss the progress of the study. I’m still helping with the next steps of the ELSA study.

Avoiding a shock diagnosis

My younger brother Terry has type 1, so I had grown up with the condition in my life. But it still hit like a bomb when my daughter was diagnosed with type 1. If a parent knows their child is at a higher risk of developing type 1, they can pre-arm themselves with information so that it isn’t such a whirlwind of information when the diagnosis comes.

Advice for getting involved in research

There are many ways to help research into different aspects of type 1. I’d recommend looking into it to see if there are any opportunities that interest you because it can be very rewarding. Another parent had posted about the ELSA study on one of the type 1 diabetes Facebook groups that I am a member of. So, I emailed a member of the research team for more information and joined the team as a volunteer.

Fitting volunteering around life

I had looked into volunteering a few times, but I couldn’t find anything that I could commit the time to. Being a parent contributor fitted nicely around my life as a working mum of four kids. I was particularly excited about the ELSA study as I felt it could be life-changing for families.

Feeling proud and learning about science

I enjoyed the process of helping set up the study and watching it evolve. When the ELSA Study went live on World Diabetes Day 2022, I felt very proud that I had helped the study evolve. I found it really interesting to learn about the science behind the screening test for type 1 and how it all worked. I have really enjoyed this process and would be interested in being involved in another one.

Fundraising for JDRF

My daughter Bella and I are raising money for JDRF by taking on the Climb 1 for Type 1 challenge. I can see how the technology and support for people with type 1 diabetes has changed since I was a child, when my brother was diagnosed, and it’s amazing. Raising money helps fund research projects to improve the lives of people with type 1 with better support through advances in technology and science.

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Further reading

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The ELSA Study

Find out more about the ELSA Study, which Amanda helped design.

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