Major new study to ‘serve the mental health community’

Researchers at King's College London are aiming to recruit 40,000 people in England who have been diagnosed with anxiety and/or depression to take part in future research. The Genetic Links to Anxiety and Depression (GLAD) study is being led by Dr Gerome Breen, Reader of Translational & Neuropsychiatric Genetics and anxiety expert Professor of Developmental Behavioural Genetics Thalia Eley at the King's NIHR Maudsley Biomedical Research Centre. Ella Rhodes spoke to Professor Eley to find out more about this ambitious project.

Can you tell me some of the background to the GLAD study?
Here at King's College London we are hosts to one of the Biomedical Research Centres (BRCs) funded by the National Institute for Health Research (NIHR), which is the research funding organisation directly funded by the Department of Health and Social Care. As part of that NIHR Maudsley BRC we have a BioResource, which primarily recruits volunteers who agree to be recontacted and houses their genetic samples. This is led by Dr Gerome Breen, with whom I collaborate on running this study. This spring the NIHR announced there was funding available to increase recruitment into the Mental Health BioResource, which is part of the national NIHR BioResource. The way we want to do that is by targeting common mental health problems – particularly anxiety and depression. Gerome's focus is on depression, and he is the overall lead; while mine is anxiety, and I lead on clinical engagement and psychological aspects of the study.

The reasons we chose to focus on anxiety and depression are ones that you'll be very familiar with already: these disorders are incredibly common – affecting between a quarter and one third of the population at some point in their lives – and symptoms often start a very young age. Anxiety disorders commonly begin during primary school – around half of them begin before the age of 11. Depression begins later but half of cases shows symptoms before the age of 19.

Only about one in four people who experience depression or anxiety actually make it into treatment, so they're often untreated as well. These problems are associated with a high degree of impairment in undertaking everyday activities, meaning that people with depression and anxiety find it very difficult to remain in education, and to hold down a job, and there's often a social withdrawal element as well. These conditions are also extremely costly to the UK taxpayer: anxiety and depression cost around 12 to 14 billion pounds each per year.

What will the GLAD study involve?
The rationale for the GLAD study is to further our understanding of the development and treatment of anxiety and depression. To do this, we need to be able to access many people who have had or currently have these diagnoses. This will allow us to undertake research at the scale required to better understand the risks and to develop better treatments for future generations. Although we have an immediate aim of looking at the relationship between anxiety and depression symptoms and genetic data, by signing up to GLAD via our website, people will also be able to take part in future studies relevant to their conditions. There'll be a steering committee who will make decisions over who's allowed to access the data and who's allowed to contact participants to invite them to take part in these future studies.

Once a participant has signed up, they will provide consent for us to access their medical records, information about their experiences, and a saliva sample, from which we will extract DNA, which will be included in the NIHR Mental Health BioResource. As well as using the platform to allow researchers better access to these participants, we'll also be able to use that initial data to understand more about the genetic influences on depression and anxiety.

Who can enrol?
Anyone who has had a diagnosis of anxiety or depression and is over 16 years old can sign up. In particular, we're hoping to attract younger adults (i.e. those below 25 years) as the existing UK Biobank [www.ukbiobank.ac.uk, another large bioresource] includes older adults. We're also very interested in hearing from groups who have been underrepresented in research, particularly males, those of non-standard gender and people in ethnic minorities. We do want this project to be for everyone, but we particularly want to encourage underrepresented groups to take part, so they become as well served as others by the research community. We'd also like to see people in high-stress professions such the police and fire service enrol.

What's the potential scope for this – have you had any ideas as to where this could take research in the area?
In terms of future studies, it's really a question of 'How wide can you think?'. Any study for which it's relevant to recruit people who have had a diagnosis of anxiety and depression during their lives will be able to contact us to see if they can recruit from the resource. The purpose is to facilitate future research, and people will be able to select participants on the basis of information we've been given by these individuals. Researchers will also be able to search on the basis of the genetic information of participants, which will become available a year or so after the study goes live. They'll also be able to select participants from information in their medical records, so they could identify people who have experienced a particular physical health condition. The possibilities are infinite really.

Personally, I'm really interested in using genetics to try to help people get into the right treatment first time around. I will definitely be interested in working with the data to explore such questions.

There are also a lot of people who are told by their doctor they have anxiety or depression but who never get treatment, and that group could be really interesting to work with. This kind of large-scale national recruitment could be very helpful because people don't have to have been treated to join our study – in fact it's great for us if they haven't, because then we can learn about what decisions they've made or difficulties they have experienced about accessing treatment. This kind of work could enable us to do some public health work around barriers to accessing treatment.

Whilst we already know quite a bit about the risk factors for these conditions, there is always more to learn. By recruiting such a large number of people, we really hope we will be able to work with rarer subgroups that perhaps haven't been served so well in previous research. We know there are groups in the population who face greater levels of stigma than others, and I would hope all of those groups would sign up to this resource.

We also hope the mental health community will come back and tell us what they'd like to find out. The James Lind Alliance recently published a list of the top 10 research questions that those who have experienced depression would like to see answered. We have spoken with a number of particularly relevant charities and are delighted to have the support of several, including both MIND and the Mental Health Foundation. We hope that through working with such charities we'll be able to really raise the profile of questions this community want to have answered. The project is also being supported by MQ the mental health research charity, and by the Royal College of Psychiatrists, both of whom will be helping to spread the word about the study.

How can psychologists help with recruitment?
We would like clinical psychologists and other psychological practitioners to suggest their patients have a look at the website and consider signing up to take part. We want this to be a study that serves the mental health community and we want their questions about depression and anxiety to be a priority. At the moment the study is funded by NIHR, which means recruitment will be within England, but we are in discussions with linked bodies in Wales, Northern Ireland and Scotland to set up similar initiatives in other parts of the UK.

- You can learn more about the study at GLADstudy.org.uk, where there is an animation about the consent process and detailed information on how to enrol. Follow the study on Twitter @GLADStudy.