Date: 06 July 2017
A research study learning about the characteristics of newly diagnosed type 1 diabetes in the UK, is supporting other research studies recruit participants at the same time.
ADDRESS-2 was set up in 2011, and its combined study and recruitment service approach is unique for diabetes research in the UK.
The study element of ADDRESS-2 aims to identify the different characteristics of new-onset type 1 diabetes (six months or less from diagnosis) in modern and ethnically diverse Britain.
The study team have been analysing information collected from consenting participants aged five years or older. Akaal Kaur, Research Coordinator at Imperial College London, explains: “Research nurses ask the participants and get information from their medical records about their diabetes, medical history and family medical history. Also if the participant agrees the nurse will take a blood sample for analysis and storage – this is optional.”
The participants are also informed that they are consenting to be contacted about other type 1 diabetes early diagnosis research studies, for which they might be eligible. This does not mean they are agreeing to take part in these studies. That is completely up to the individual.
The difficulty for studies of new treatments for type 1 diabetes is that they often need research participants who have type 1 diabetes diagnosed within the last six months or less.
Akaal said: “Thanks to the NIHR research nurses across all of the sites and NHS trusts on board with the project we are able to recruit those people early after diagnosis. Without them recruitment wouldn’t be possible.”
ADDRESS-2 also recruits siblings of participants with type 1 diabetes enrolled on the research project, if they don’t have diabetes.
The study team are looking into a variety of different features of type 1 diabetes in people who have been recently diagnosed. Akaal said: “We’re trying to identify what the picture of diabetes is looking like in the UK.”
Akaal and other members of the study team, Shivani Misra and Helen Walkey, will be presenting some of their findings at the American Diabetes Association from 9-13 June in San Diego, California. These include:
ADDRESS-2 has managed to recruit over 5,000 research participants since it began in 2011. Akaal explains that the recruitment service doesn’t just support early diagnosis studies: “The focus has been to ensure that participants have been informed of immunotherapy studies, which require people in the early phase of diabetes. However, when these participants go beyond the six month criteria they also take part in long term diabetes studies.”
One research participant recruited to a study through ADDRESS-2 is Kelvin Driscoll. Kelvin, 40 years old, said: “When I was first diagnosed with diabetes I was keen to take part in research, so I was put in touch with a research nurse. She told me about ADDRESS-2 and that there was a study that needed people as soon as possible, so I was all for it at first.
“Then I took a bit of time to think about it, as I was confused about my sudden diagnosis and had to get my head around it. But when I received more information and spoke to my mum, who had worked in cancer care, I knew it was the right thing to do. Because if no one takes part, we won’t make the progress we need.
“It wasn’t a decision I will benefit from, but it wasn’t about that, I want to make a bit of difference for others early on with diabetes.”
Kelvin, from Oxford, goes to London every six weeks for treatment and check ups: “It is quite intensive, but now I’m taking part I’m quite enjoying it.
“I also get to quiz the top diabetes experts about my condition and get all of the information I need. It means I can live my life how I want and keep cycling.
If I have any problems, I’m in close contact with the lead consultant, so I can email or call him. And the research team contact me on a weekly basis.”
Helen Walkey, ADDRESS-2 Coordinator, said: “We know that using a national recruitment model can boost recruitment rates, so we’d like to encourage all researchers conducting studies in recent-onset type 1 diabetes in the UK to use ADDRESS-2 as a recruitment tool.”
The Local Trial Manager for the trial, run by Novo Nordisk, said: “We were aware when setting up the study that recruiting patients into a clinical trial soon after diagnosis would have some challenges. We have had many patients referred into the study via ADDRESS-2 which has had a very positive impact on recruitment and has contributed to the UK finishing as one of the top recruiting countries globally when recruitment closed recently.”
BMJ Open recently published the study protocol for ADDRESS-2.
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