Joining a Clinical Trial: John’s Story

December 10, 2019

John has a unique perspective on the importance of clinical trials.

After years of helping to run cancer trials, he made the transition from research manager to research participant when he heard about a promising new treatment for retinopathy – eye damage caused by T1D.

“My endocrinologist had mentioned this great new drug for retinopathy in type 2 diabetes, and how it was also being studied for people with type 1. I was told about 10 years ago that I had mild retinopathy, so I contacted the study team and asked how I could take part.”

John visited a hospital for an initial visit, and found that he fit the criteria for the FAME-1 Eye study. The study is testing whether fenofibrate – a tablet used to lower cholesterol – can slow or reverse the effects of retinopathy.

“At that initial visit I had the opportunity to talk to the trial team and find out more about what would be involved, and ask any questions I had. Once I’d decided to take part I signed a consent form – basically a legal document saying that I’ll do what’s required in the trial, but also that I can withdraw from the study at any time, for any reason.”

For John, the decision to take part in FAME-1 Eye was an easy one.

John takes one tablet each morning with breakfast, and visits the hospital across the road from his work every 3-6 months to talk with a doctor. Every 12 months, he has an eye scan to monitor the progression of his retinopathy. This scan produces an extremely high level of detail of the back of the eye, and can pick up tiny changes that routine scans would miss.

“The monitoring that I get as part of this trial is above and beyond what I would otherwise get, and that’s the same with a lot of studies. The opportunity you get to access these expensive and sophisticated new technologies for free – it really is priceless.”

John encourages people with T1D to have a discussion with their diabetes team – either their diabetes educator or endocrinologist – about clinical trials that might be relevant for them.

“It’s always worth starting a conversation, because there’s no pressure – if you join a trial and decide it’s too onerous, you can always pull out. But the opportunities you get from being part of a clinical trial, to help yourself as well as help others – they make it such a worthwhile experience.”

Find out more about the FAME-1 Eye study here.

You can also sign up to be a Game Changer and stay up to date on developments from the world of research and clinical trials here.