Where did we start, where are we now, and where are we going?
It’s been over a year now since EDGI launched, and we want to give a huge thank you to everyone who has participated so far. Our research is not possible without our wonderful, dedicated participants.
On 25th February 2020, we celebrated the launch of EDGI UK, part of the NIHR BioResource, alongside our attendees and speakers Hope Virgo, Tina McGuff, Elizabeth McNaught, Andrew Radford from Beat, John Bradley from the NIHR BioResource, and the Principal Investigators of the study, Gerome Breen and Janet Treasure. We had a hugely successful first week, with over 1,000 people signing up to take part!
However, only three weeks later, the COVID-19 pandemic hit and our offices were closed. Fortunately, as our study is largely conducted online, participants were still able to sign up to take part. However, we were unable to send saliva kits out to our participants for six months, so the genetics research – a key aspect of our study – had to pause. In lieu of this, we would like to dedicate the end of September as our “one year anniversary”; we’re excited to share with you what’s been happening since we first launched.
EDGI in the media
Although the COVID-19 news was prioritised during this time, we were fortunate to still have some opportunities to spread the word about EDGI:
- Our clinical lead, Janet Treasure, and the chief executive of Beat, Andrew Radford, spoke on BBC 4 Woman’s Hour.
- Our scientific lead, Gerome Breen, and mental health activist, Hope Virgo, spoke to Kay Burley on Sky News on February 26th (the day of our website launch).
- We were featured in several online news articles including ITV News, PharmaTimes, EurekAlert, and Beat’s website.
- Our Instagram Live with Hope Virgo was a huge success, and we are busy planning our next one with Gerome in conversation with Beat, “Are eating disorders genetic?” in November with more to come – stay tuned!
- We have written several blogs about eating disorders, with a particular focus on research and genetics. Check them out here.
- We’ve recruited participants into EDGI through our social media handles; Instagram, Twitter, and Facebook and through NHS sites. This year we designed specific advertisements to recruit people with binge-eating disorder, the most common adult eating disorder yet one of the most underresearched. Did you know 1 in 50 people will experience this disorder in their lifetime?
Where are we now?
Now, we have over 16,000 people registered to our website. Over 5,500 of these people have completed their questionnaire and just over 3,000 have sent back their saliva kits, a crucial part of the process, so we can better understand the biological and genetic aspects of eating disorders.
Most common eating disorders represented in EDGI
EDGI is recruiting anyone who is over the age of 16, lives in England, and who is currently experiencing or ever experienced any type of eating disorder at any point in their life. You do not have to have had a diagnosis or treatment to take part.
The majority of the 5,500 participants who have taken part so far identify as white, female, and are between the ages of 16-24. In the future, we hope to reach our goal of 10,000 participants and to improve the diversity within our study. It is important that we represent all eating disorders and participants from all backgrounds, ethnicities, genders, and ages to ensure that our findings are applicable to all.
Here you can see a breakdown of the most common eating disorders currently represented in EDGI, split down by gender. Whilst eating disorders such as anorexia and bulimia do indeed affect females more than any other gender, these findings do not accurately represent how eating disorders are in society, and in particular males. Men and boys are estimated to represent around 25% of all eating disorders.
Collaborations and organisations
Beat is the UK’s largest eating disorder charity, with a mission to “end the pain and suffering caused by eating disorders.” Our partnership with Beat has been invaluable. Beat works closely with individuals with eating disorders and the parents and carers of those suffering, to ensure help is given to all who need it. If you are in need of support, Beat offers free helplines and chat services. Find out more about Beat and their support networks by visiting their website or our Beat page. Currently, through the implementation of a new questionnaire within EDGI, we are assisting them with their work that challenges calorie labelling on menus.
The National Institute for Health Research (NIHR) BioResource supports and funds EDGI, and all who take part in EDGI are a part of the NIHR BioResouce. The NIHR BioResource are made up of a cohort of re-contactable volunteers who are willing to be approached to take part in research studies, for both physical and mental health. To date, 150,000 volunteers have donated biological samples and allowed secure access to their medical records and clinical information for research purposes. This enables research to occur at a quicker rate so that we can better understand both physical and mental health conditions and discover new treatment options. We are grateful for their continuous support for EDGI.
F.E.A.S.T. stands for Families Empowered and Supporting Treatment of Eating Disorders and is a non-profit, supportive, and educational community made up of and for parents and carers for those with eating disorders. F.E.A.S.T has been running since 2007 and has supported numerous families and research projects, including Charlotte’s Helix which is now part of the NIHR BioResource, and the Anorexia Nervosa Genetics Initiative (ANGI) Study. You can find more information about them and their support services on their website here and their blog about ‘Genetics research, advocacy, and Charlotte‘.
“…I became convinced I was a failure as a parent. It took over 8 years and the growing understanding and awareness of the work that EDGI was doing to disabuse me of that belief…the research into the genetics around these illnesses provides hope and knowledge – which as we all know – is power. ” – Parent in F.E.A.S.T.
Eating disorder funding
Eating disorder research is chronically underfunded. Only 1% of all mental health funding is spent on eating disorder research. Newly released research from Beat found that only £1.13 is spent per person annually on eating disorders in the UK. To read the full report, click here. We have also written a blog on our website called “Eating disorders bear the brunt of the paucity in mental health research funding”. Read it here.
Where are we going?
For too long, eating disorders have been stigmatised by society, underrepresented in mental health research, and overlooked by funding bodies. Together with your help, we want to change this.
EDGI will continue to recruit participants and over the next few years, we aim to reach our goal of 10,000 participants within EDGI UK and 40,000 globally within EDGI World (check out our international collaborators here). Genetic research requires thousands of participants – every single person counts. We want to continue to expand our knowledge on the environmental and genetic factors that influence the development of all eating disorders in order to find better treatments for future and current service users and patients. Our aims over the next few years are:
- Increase the diversity of the EDGI cohort
- Advise on public policy regarding eating disorder services and funding
- Expand EDGI to the rest of the UK including Scotland, Northern Ireland and Wales. Currently, due to ethics and funding regulations, we are only able to recruit participants from England
- Expand recruitment into NHS Trusts and clinics around England
- Continue to address the stigma that currently surrounds eating disorders
- Bring more light to underresearched eating disorder such as bulimia nervosa, binge-eating disorder, and ARFID.
- Continue to to provide educational content about eating disorders and mental health to our social media followers and beyond
Thank you to all our participants who have taken part, or who will take part, in EDGI. Without you, EDGI would not exist. We also want to thank all our collaborators, partnerships, and those who have posted about us or spread the word about EDGI. We are grateful for all the support we have been shown this past year.
Thank you to all the NHS sites and clinics who are currently helping recruit for EDGI and for all who have expressed an interest! We are busy working on setting up new sites and expanding it to more Trusts as soon as we can. If you are an NHS site or clinic in England and are interested in recruiting for EDGI, email us at firstname.lastname@example.org.
Our team welcomes placement students each year to gain work experience and get a glimpse into the life of a researcher. These students have been an integral part of the team and have contributed massively to the success of EDGI. We would like to give a special shout out to these students for all of their hard work, from the set up of the study, to where we are today. A massive thank you to Bronte, Anna, Beth, Tilly, George, Liv, Elisabeth, Prateek, Karis, Quinn, and Steven. We wish you all the best in your studies and future careers.