Eating Disorders Genetics Initiative (EDGI)
Calling for participants until
Participant type
Key Documents
Overview
EDGI is a project set up to explore genetic and environmental risk factors in individuals who have experienced or been diagnosed with an eating disorder. We want to understand how genetic and environmental risk factors influence eating disorders.
Together, with your contribution, we can make a difference and improve future treatments!
Summary
What is the study about?
Eating disorders are severe psychiatric illnesses and are associated with one of the highest mortality rates within mental health. To improve our understanding of the genetic and environmental risk factors behind eating disorders, we need to recruit thousands of participants.
We therefore invite you to take part in the Eating Disorders Genetics Initiative (EDGI) and to join a large study of individuals who have experienced or are currently experiencing anorexia nervosa, bulimia nervosa, binge-eating disorder or any other eating disorder. The project is led by the National Institute for Health and Care Research (NIHR) BioResource Centre Maudsley (which is part of the NIHR BioResource), researchers at King’s College London and Beat, the UK’s eating disorder charity.
What are you trying to find out?
EDGI aims to conduct research on mental health and treatment. We will:
- Collect psychological data (questionnaire data) and biological (saliva and/or blood) samples so that we can learn more about the factors that may influence anorexia nervosa, bulimia nervosa, binge-eating disorder or any other eating disorder.
- Link members’ psychological and biological data with their medical, health and social care records.
EDGI also aims to create an online research active group of individuals with anorexia nervosa, bulimia nervosa, binge-eating disorder, or any other eating disorder as part of the NIHR Mental Health BioResource. We will:
- Create an online resource of members interested in taking part in research.
- Provide members with information about research projects that they can get involved in.
- Regularly update members on the progress of the research and the contribution that they have made.
- Provide links to pages that provide detailed information on mental health difficulties, the treatments available, and where to seek help if it is needed.
What does taking part involve?
- Step 1: Giving consent to take part
- Step 2: Questionnaire data
- Step 3: Biological sample (saliva sample)
Signing up to EDGI will involve providing access to your medical records, health-related and social care records (so we can find out some important clinical information), completing some questionnaires, and giving a biological sample. Providing access to your medical, health related and social care records will help to gather more information in order to examine risk factors associated with eating disorders and other health disorders, and establish more in-depth information relating to eligibility for future research.
Who is it for?
To take part in the Eating Disorders Genetics Initiative, part of the NIHR BioResource, you must:
- Have experienced, or have been diagnosed with an eating disorder
- Be aged 16 and above
- Live in England
Why is it important?
There may be no immediate benefit to you in terms of treatment, but you will contribute to knowledge about some of the causes of anorexia nervosa, bulimia nervosa, binge-eating disorder, or any other eating disorder. This knowledge may lead to better treatment guidelines and improve future care for patients.
EDGI is an information resource for members as well as researchers. With this in mind, you will have access to pages dedicated to providing useful information to members.
By joining EDGI, you are also joining the NIHR BioResource. Once you are a member of EDGI and the NIHR BioResource, you will be able to see information about further optional questionnaires, as well as a number of research studies that you may be eligible to take part in. You may also be contacted about studies you may be eligible for that are not only related to eating disorders. We may assess your eligibility for these studies based on information you have provided (i.e. questionnaires), or information we have accessed from your medical, health and social care records (i.e. diagnosis, treatment outcome) or samples (i.e. genetic information). We closely monitor how many times you are approached for future studies and restrict invitations. You may be invited to be a participant in up to 8 studies per year (4 face-to-face and 4 online). You are free to accept or reject these invitations. We will also contact you from time to time with information about the progress of the research through newsletters etc.
How can I find out more?
You can find out more information about taking part in this study by downloading the key documents at the top of this page.
If you are interested in taking part in this study, or have questions for the research team, click the button below to sign up on EDGI's website:
Don't forget that you found out about the study from GMMH!
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