Getting involved in research
The lack of information available at the time motivated me to later get involved with the UK Islet Autoantibody Registry. I’m part of the project team, and can bring my dual perspective of having a child who was diagnosed late and was very unwell with DKA, and a child whose risk has been identified much earlier. So, I can see both the benefits and the challenges of early detection.
The Registry will give researchers the data they need to be able to understand more about the development of type 1 diabetes. And to explore the best ways to support people at risk psychologically and to create a proper care pathway for them. For families like ours, it will be a place to go for trusted information and peer support.
"Crucially, it will also be a place to find out about opportunities to take part in trials for new treatments – ones that could keep holding off the full development of type 1 diabetes for as long as possible."
With studies like ELSA now screening more widely for autoantibodies, there’s going to be more people identified in the early stages of type 1 diabetes. So, the Registry will be hugely beneficial.