JDRF, the type 1 diabetes charityStoriesMatt’s story of ‘ADDRESS-ing’ type 1 diabetes

Matt’s story of ‘ADDRESS-ing’ type 1 diabetes

Author: Matt's story | Posted: 18 November 2016

Yesterday, we featured a guest post about the ADDRESS-2 project. You can read that post here. In this guest blog, Matt, who joined the ADDRESS 2 project shortly after receiving his diagnosis, describes what happened next.

What did you feel when being approached about research very soon after diagnosis?

At the time any help or advice I was given was welcomed, and being approached to take part in research iMattnvolving experts in the field of my condition seemed like a good idea.

What motivated you or influenced your decision to take part in ADDRESS-2, and any other study that you have joined?

I wanted to help in any way I could, and turn something good from a bad situation (my diagnosis). I also was curious whether participating might help me find out any more information about my condition. I hoped it might help in providing a step closer to future medicines that might benefit me, or someone like me, in the future.

What would have put you off taking part in research? 

Too much time off work. As a freelancer, any missed days are lost revenue. Although this didn’t affect the ADDRESS-2 study, it has prevented me taking part in other Diabetes studies.

Is there any one thing that you especially remember about taking part in ADDRESS-2 and other studies?

The amount of blood that was take was quite a lot from memory. I’m sure this was necessary, but I felt a bit dizzy afterwards and had a hypo as I was leaving. This may have not been related, but it was a bit scary leaving the hospital, but I had to get to work so had to deal with it.

What do you think is a good time or a good way to approach people about research?

Being offered to take part in research provides some needed hope when a patient has just received bad news, so it’s possibly a good time to approach people. I also think patients are more likely to agree to be involved in research at this time due to the perceived possible personal gain (whether this is actually true or not). Highlighting the additional potential help and clinical support was a big factor in agreeing to participate (in the MultiPepT1D trial).

Find out more about joining ADDRESS-2, and the research projects they work with, on their website, and @ADDRESS_T1DRes, and on Facebook.

The ADDRESS 2 team on the background to the study

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. 

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.

Researching the study himself – Andrew Kennedy

‘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’.

Being 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’.