Receiving a diagnosis of type 1 for yourself, or someone you care for, can be a challenging time. Getting involved in research might not be the top priority, but the ADDRESS 2 project, which collects data from people newly diagnosed with type 1 diabetes, is proving a vital resource for researchers trying to understand development of the condition, and an opportunity for people with type 1 to access clinical trials. Eleanor Kennedy tell us more in this blog.
The identity of the ‘smoking gun’ that triggers type 1 diabetes in people who have susceptibility remains largely unknown although a number of environmental factors have been implicated in its onset. Whatever the cause, the incidence is increasing in many parts of the world and teams of scientists are working to unravel how and why type 1 diabetes develops.
A vital part of this work is access to people with newly diagnosed type 1 diabetes who can help the scientists and clinicians to understand the condition better. In 2011, with JDRF and Diabetes UK support, the ADDRESS-2 project was set up to invite all people with newly diagnosed type 1 diabetes and their siblings, who are at increased risk, to donate DNA and other information to a large repository. The anonymous data is made accessible to researchers beyond the ADDRESS-2 team, ensuring that the widest number of research groups can make good use of the data. The samples and data are being used by researchers to investigate the way the condition works as they conduct research to find a cure for type 1 diabetes.
By joining ADDRESS-2, people with newly diagnosed type 1 can be put in contact with researchers conducting studies, including clinical trials. Five years since being established, the project is still attracting people with type 1, and their siblings.
Andrew Kennedy, recently diagnosed with type 1 diabetes, did his own research. ‘I heard an advert on a local radio station about somebody doing a study on type 1 in the north of England and I ended up getting in touch with them and they put me in touch with the Royal Liverpool Hospital. Through that initial contact, I heard about the ADDRESS-2 database’.
Others, however, are proactively approached by healthcare professionals. Peter Amphlett found out about ADDRESS-2 just shortly after his diagnosis at the Lincoln County Hospital in May 2012. He is delighted to have got involved when he did. ‘I signed on the dotted line immediately because I knew that I would find out a lot more about my condition if I could get involved in trials. And I did. I’ve had a lot of help, expert advice and feedback that I wouldn’t have had if I’d said no.’ Charles Vaughan feels the same way. ‘I was diagnosed year or so ago when I was a student and it was through contact with one of the nurses during this period that I heard about ADDRESS-2’.
Both Peter and Charles took part in the now complete Adaptive Study of IL-2 Dose on Regulatory T cells in Type 1 Diabetes (DILT1D) research study at Addenbrooke’s Hospital, Cambridge, supported by the JDRF/Wellcome Trust Diabetes and Inflammation Laboratory. This project was part of a programme of research looking to see if this intervention can halt the damage to the pancreas of people with newly diagnosed type 1 diabetes and if so, what dose of the drug is required for the best results. Charles has already signed up for the next part of the programme. ‘For me, it’s not a cure but it’s a one-to-one tutorial on how to deal with type 1’.
Peter agrees. ‘It’s been brilliant to be involved with this and it may help someone else at their point of their diagnosis’. Andrew, on the other hand, was screened for MonoPepT1De at the University of Cardiff. ‘I met with the nurses and with the consultant in charge. They were really friendly and helpful. I even had my own little ward to myself!’. He continues ‘I’d certainly recommend someone else who has been recently diagnosed to sign up to ADDRESS-2. The only way to move forward in any kind of research is to study a decent sample size. You can’t get by with a handful of people so, if we’re going to find a cure for this, I’d encourage everyone who can to sign up’