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Shared experience

Each clinical trial is a step towards better treatments and eventually a cure for type 1

14-year-old Daisy Abbs and her mum, Kathy, share their experience of taking part in the USTEKID Study, a clinical trial of an immune therapy called ustekinumab.

Ustekinumab is already used to treat other autoimmune conditions, including Crohn’s disease and psoriasis. Researchers hope the drug could also delay or stop the damage to the pancreas in people recently diagnosed with type 1.

How do you join a clinical trial?

Daisy: When I was diagnosed with type 1 diabetes in July 2020, my mum learned as much as she could about it. She read about people who had taken part in clinical trials. They all found it interesting, learned a lot about type 1, and felt like they were helping to improve the future for people with type 1.

Kathy: USTEKID was the first trial we signed up for. We applied online, then spoke to the research nurse and the consultant to discuss our questions and concerns. After that, Daisy had some medical checks and blood tests at the hospital, and that was it.

Daisy started the USTEKID trial just a few weeks after being diagnosed with type 1. Everything about type 1 was new and scary for us at that time.

What happens in a clinical trial?

Daisy: Sometimes the research team did a milkshake test (testing for insulin-producing cells), sometimes an injection, and sometimes I had different blood tests. We also did some finger prick blood tests at home and sent them in. The appointments ranged from just a few minutes long to a couple of hours.

The people running the trial were so patient and friendly. They always asked me if I still wanted to be part of it, saying I could change my mind at any time if I wanted to. The clinical team answered all our questions – whether they were about the trial or type 1 in general.

Kathy: We still don’t know if Daisy was on ustekinumab or a placebo. At first it was a little worrying wondering what the drug might do to Daisy, but the team reassured me that it’s already used to treat many other conditions all the time.

We were still in the midst of COVID, so it was comforting that Daisy was getting extra medical attention from the clinical trial. It was because of these extra hospital visits that Daisy’s hypothyroidism was spotted so quickly and treatment began sooner than it otherwise would have.

What are the benefits of taking part in a clinical trial?

Daisy: The best part about being in the trial was that I learned new things about my diabetes. I also learned not to worry when things don’t go as I think they will.

Kathy: It was nice spending time with Daisy because it gave me a better understanding of how she feels about and deals with her type 1. And it feels good that Daisy really could be a piece of the puzzle in finding a cure for type 1.

What advice would you give people about joining a clinical trial?

Daisy: I would advise people considering taking part in a clinical trial to find out exactly what the trial is about and how long it will take. Ask questions – lots of them. The clinicians are great at answering and no question is too small or too silly.

At first, my trial appointments were always the same time and day of the week, so I always missed the same subject at school. I told the nurse that I felt I was getting behind and she moved the timings so that sometimes we went after school instead.

Kathy: Be prepared to put in the time but it really is worth it. The extra medical attention and close monitoring you get is so valuable, especially in those early weeks and months when everything feels so crazy.

How do clinical trials help type 1 diabetes research?

Kathy: All the people who have taken part in clinical trials in the past have helped progress diabetes research and made life easier for people with type 1. People like Daisy who are taking part in trials now will make living with type 1 easier for themselves and others in the future. It’s about everyone doing a little bit and being part of something so important.

I’ve learned that trials are not instant cures but that they do increase your knowledge and understanding, which made us more confident in managing Daisy’s type 1. Trials are not quick fixes but, by taking part in whatever way we can, we give type 1s an easier future. Every trial and every trial volunteer gets us all a step closer to a better understanding of type 1, better treatments and eventually a cure.

Find a clinical trial for you to join

Every new treatment and technology must go through clinical trials, which each need volunteers with different characteristics to take part. So, if Kathy and Daisy have inspired you to join a clinical trial, use our clinical trial finder tool to help you find a trial suitable for you.

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