I’ve talked about depression a lot on my blog recently. I’ve been very open about my own experiences, but I’m acutely aware that my experiences are individual to me, and on the whole, we don’t completely understand why people experience depression, why they experience it in certain ways, or how we should treat it best. Sometimes it can be really frustrating to live with depression; previously I’ve found myself feeling a bit jealous of people that don’t have this heavy blanket to carry round with them – why do I have these experiences? Why don’t others? If I have kids will they have these experiences too?
Instead of being jealous or frustrated, in recent months I’ve mad a conscious effort to make my own experiences of depression feel worthwhile. Whether that’s been blogging about it, providing online support to people that I’ve never met, talking to people in real life.. it’s been a weirdly nice way to ensure that something good comes out of such difficult experiences.
Now, I’ve decided to take part in a research study.
My entire PhD looked at participant recruitment in research (specifically, clinical trials), so I know that recruitment is hard. That said, I’m not taking part because I don’t want the researchers running the study to stress-cry more than absolutely necessary. I’m taking part in a research study about depression because it makes me feel like I’m contributing to solving the problem. If I have to live with depression, then I may as well use my experiences to help researchers understand it more thoroughly. Maybe my contribution to research will help answer why I have these experiences, why others don’t, and whether any potential children of mine would be at risk of these experiences as well.
So, what’s the study?
Recently, researchers at King’s College London launched the largest ever single study of depression and anxiety. They aim to recruit at least 40,000 people living in the UK that have experienced depression or anxiety at some point in their life. This study, the Genetic Links to Anxiety and Depression (GLAD) study aims to ‘make important strides towards better understanding of these disorders and improving the lives of future patients‘.
If you live in the UK and have experience of depression or anxiety, I would really recommend that you watch the video below, and read on to find out more information about what taking part in the GLAD study involves.
It’s really important that we try to get as many people from as many different backgrounds to take part. When lots of similar people (i.e. people of one ethnicity, people of a limited age group, people of the same gender etc) take part in research, the results are at serious risk of bias – meaning that the results would only be applicable to the group of people that took part in the study. The GLAD study team has explicitly said that they want to recruit from diverse groups that represent the entire UK population, and they are actively working to address the complex barriers that exist for some potential participants by working with mental health organisations that have links to various different communities around the UK.
Clearly, it’s important that everyone with experience of depression or anxiety takes part in this study, but if you do know of any mental health organisations, or community groups that you feel may be difficult to connect with via the methods that the team are already using, please do forward them this blog post or direct them to the study website (www.gladstudy.org.uk) for more information.
How you can take part in the GLAD Study
Step 1: If you have personal experience of depression or anxiety, and live in England, Scotland, Wales or Northern Ireland, head to www.gladstudy.org.uk. Scroll to the bottom of that page and enter your details to sign up.
Step 2: Read the information sheet carefully to ensure that you understand what the study entails, and what will be expected of you if you take part.
Step 3: Go through the consent process, this is a series of 15 yes/no questions, and you’re also asked for your address and NHS number (I didn’t know my NHS number and was still able to go ahead and complete it – I’ll go back and complete my NHS number when I have it later this week).
Step 4: Complete the GLAD study survey. This is quite a long process, but it’s where the bulk of the effort comes in terms of research participation – after this involvement is pretty minimal (but still important) going forward. I think it took me about 30 minutes or so to complete the survey. The survey is split into various categories, the sensitive ones also include an option to skip if you don’t feel comfortable answering them, which I thought was a good way to ensure that the research doesn’t trigger anyone with particular life experiences.
Step 5: A GLAD study saliva kit was sent to me within just a few days of completing my address details in step 3. Open this up and make sure that you have everything listed in this ‘what is in my saliva kit?’ section of the leaflet enclosed.
Step 4: Follow the instructions to fill the saliva sample tube – note, make sure to brush your teeth 30 minutes before giving you sample, and don’t eat or drink anything in that time. You need to fill the tube to the 4ml line, and there will already be 2ml of a DNA stabiliser in there. This may take a few goes; 2ml of saliva is a lot more than I expected, it took me 5 goes to get enough! Pop the lid firmly back on the tube and shake it up.
Step 5: Put everything in the freepost envelope that comes in the kit, and pop it in the post box.
When the study team receive your sample, they will extract DNA from your sample. Samples will then be stored without any of your personal details; if you are from England and Northern Ireland, your sample will be stored at the NationalBiosample Centre (NBC) in Milton Keynes, if you are from Northern Ireland, some of your sample will also be stored in secure facilities at Ulster University in Coleraine, if you are from Scotland, your sample will be stored at NBC and some will also be stored at the Wellcome Trust Clinical Research Facility at the University of Edinburgh, if you are from Wales, your sample will be stored at NBC and some will also be stored at National Centre for Mental Health/MRC Centre for Neuropsychiatric Genetics and Genomicsat Cardiff University.
This post is in no way sponsored or affiliated with the GLAD study. I enrolled in the study as a participant following the steps described above after seeing a post about the study on Twitter. I wrote this post as I want to highlight how quick and simple study participation can be, in an effort to encourage people with experiences of depression or anxiety to take part themselves.
For more information please visit www.gladstudy.org.uk.