Here are some frequently asked questions about the Eating Disorders Genetics Initiative.
Here are some frequently asked questions about the Eating Disorders Genetics Initiative.
Thank you for your interest in taking part in the EDGI. Unfortunately, you will not be able to join the study if you are under the age of 16. If you would like to take part in the NIHR BioResource, you will be able to do so with parental/guardian consent. Please contact the EDGI team at firstname.lastname@example.org for more information.
The Eating Disorders Genetics Initiative (EDGI) is an exciting research opportunity for anyone who has had or suspects they have had an eating disorder. This study aims to investigate the influence our genes have on the development of anorexia nervosa, bulimia nervosa, binge-eating or any other eating disorder. For more information, please see our information sheet here: Information Sheet
The National Institute of Health Research (NIHR) BioResource is a large biorepository of >100,000 people with and without health problems who are willing to be approached to participate in research studies investigating the link between genes, the environment, health and disease. It is based at centres around England and is funded by the NIHR.
The NIHR Mental Health BioResource is an integral part of the NIHR BioResource which aims to increase participation of people with mental health disorders in medical and psychological research. By joining the EDGI, you will also become a part of the NIHR BioResource, and will have the opportunity to contribute to future research.
Yes, you are still eligible to take part if you have not received a diagnosis or treatment. Whilst we are encouraging those who have received these diagnoses to sign-up, we appreciate that not everyone may have received a diagnosis for a number of reasons. The sign-up questionnaire is designed to assess your eligibility to take part based on your answers to the survey.
If you are keen to take part we recommend that you complete the sign-up questionnaire and if you are eligible we will send you a DNA kit in the post.
Unfortunately, if you live outside the UK you are not eligible to participate. We appreciate your support of the EDGI!
Please contact our research team here if you have any further questions about eligibility.
To help us facilitate research investigating factors related to the development and treatment of eating disorders, we will isolate and analyse your DNA from the saliva sample that you provide us. Using advanced laboratory techniques, we will then identify a large set of common variants and some rare variants in your DNA. Your survey data will be used to gain a better understanding of your background and disorder which we will link to your genetic data in order to allow us to create a re-contactable research platform. In addition, your survey data will help us to identify future studies that you will be eligible to take part in, across both physical and mental health. All data that you provide us will be stored securely and be kept strictly confidential in accordance with the General Data Protection Regulation.
Keeping your information secure is our highest priority. There are a number of regulations and policies that the Eating Disorders Genetics Initiative (EDGI) Project complies with to ensure data is protected and that biological samples are stored correctly.
Useful links for more information about use of personal and biological data
The General Data Protection Regulation is an EU Regulation which was put in place to ensure the protection of all EU citizens’ data privacy. It also gives people the rights to access any information held about them.
If you provide the EDGI Project team with a saliva sample, your biological sample is protected by the Human Tissue Act 2004. The Act regulates the removal, storage and use of human tissue and ensures all samples are collected appropriately.
If you would like to read more on how we keep your data secure, click here to read more information on confidentiality.
We aim to encourage all types of researchers to do more in mental health – that includes company researchers. The sad truth is that not enough commercial research is done in mental health, such as research to invent new drugs, to design mental health apps and educational aids.
We don’t yet know which companies will apply to do research in EDGI but each and every company that does will be closely examined by our advisory board and the NIHR BioResource Steering committee, which includes patient/lived experience representation. Only those companies with ethical aims, and whose research is well justified in the judgement of the scientists and medical doctors on the committees, will be approved to use EDGI data, with all data anonymised. None of your personal information will be passed to external researchers, organisations or companies without your consent. If they request to recontact EDGI participants, the EDGI Study and or the NIHR BioResource will ask you first if you want to be contacted by them on each occasion before we give them your contact details – you can decide.
Combining information from your medical records, questionnaire data, and DNA provides a comprehensive overview for researchers to use in a wide range of investigations. We will only access relevant sections of your medical records that will be helpful to the goals of the EDGI and the research projects approved by the NIHR BioResource Steering Committee. For example, we will request information on the details of your history with eating disorders and how well you responded to treatment. Unless strictly necessary, all information obtained from your medical records will be given a pseudonymised (coded) ID, kept strictly confidential and will be stored separately from your personal information (e.g. name, date of birth).
Accessing medical records is likely to be done centrally through a computer on the Secure NHS Network (N3/HSCN) using your NHS number. Any data that is stored will be linked -anonymised.
We will only access relevant sections of your medical records that will be helpful to our research across mental and physical health..
We will combine the information from your medical records with your questionnaire data, and DNA to provide a comprehensive overview for researchers to use in a wide range of investigations.
Many of the additional research studies you will be invited to take part in will be looking at eating disorders with the goal of better understanding these disorders; however, you may also be contacted to take part in other types of research studies, which may or may not be related to mental health (e.g. auto-immune diseases, cardiovascular conditions etc.) These research studies could be related to other mental or physical health studies indicated from either your questionnaire responses, physical characteristics, or genetic make-up. These studies may be advertised on the website here, or you may be contacted directly to ask whether you might be interested in participating. You are under no obligation to take part in additional studies. You may be invited to take part in up to four additional studies per year.
If the sign up form is not working for you (e.g. not accepting your email address or date of birth), we would first recommend trying to sign up on a different internet browser (e.g. Google Chrome).
If that still doesn’t work, then we can create an account for you. Please send us an email to email@example.com with your name, email address, telephone number, date of birth, sex and gender. We will create your account and then send you a password reset link so you can continue signing up.
If you are unable to log into your account and have already tried resetting your password, unfortunately the system has locked you out for security reasons. If this is the case, please wait 15 minutes and then try to reset your password again using the Reset Password link. You should then be emailed a link to reset your password, you can use the same password as you used previously.
If this does is unsuccessful and you can still not long into your account, please email us at firstname.lastname@example.org and we will manually reset your password.
In order to make sure you receive your saliva kit and any information regarding future projects it is essential that we hold your up to date information. To change any of these, please go to the ‘My Account’ page where your personal details can be updated.
There is a downloadable version of the information sheet and there is a click through version. In order to get to the consent form, you first have to click through all the pages of the information sheet on the website. If you go to your Account (click “My Account” in the upper right hand corner) and scroll down past your name and address information, there is a blue section that says “My Sign Up”.
There you can click the “Read Information Sheet” button that offers the click through version. This will take you to the first page of the information sheet. If you keep clicking continue, you will eventually reach the consent process and then the survey.
You can find both the consent animation and the click-through information sheet by clicking here. You can also find these by clicking ‘Information Sheet’ at the bottom of the ‘My Account’ page.
Taking part is entirely voluntary and you can change your mind at any time. You do not need to give a reason. If you would like to withdraw from the project, we would ask you to contact us by emailing email@example.com or calling on 020 7848 1639 or FREEPHONE 0800 917 6016 so we can register your withdrawal on our systems and get any feedback you may have of using the EDGI.
If you request it, we will remove your data from our electronic databases. You can also choose whether you would like your saliva/DNA sample to remain as an anonymised sample in the BioResource or whether you would like it to be destroyed.
Once you have completed your questionnaire, you will be sent a saliva sample kit in the post to the address you provided. This kit will include a Freepost envelope so you can return the sample.
For more information about producing a saliva sample, please see our saliva instructions leaflet here: EDGI Saliva Instructions Leaflet
Anyone interested in taking part in the EDGI must read the participant information sheet before consenting to join this study. Please find a downloadable pdf version of the full information sheet here: Information Sheet
You should be able to find your NHS Number on any letter or document you have received from the NHS, including prescriptions, test results, and hospital referral or appointment letters. If you cannot find your NHS Number at home, you can call your GP practice and they will be able to find it for you.
If you haven’t already given your NHS number, this can added from your consent page here.
You can also go to your My Account page and scroll down past your name and address information to the blue section that says “My Sign Up”. Click “Review Consent” and scroll to the bottom where you can enter your NHS number. Click “Update” to update your information.
If you have already added your NHS number but would like to change it, please let us know when is a good time to call you by emailing us at firstname.lastname@example.org or by leaving us a message at 020 7848 1639 / Freephone 0800 917 6016. For security purposes, please do not email your NHS number. One of our team can update that information for you.
Samples will be managed by the NIHR BioResource, under their contract with the NIHR National Biosample Centre.
Your genome is your complete set of DNA. Initially, we won’t be sequencing all of your DNA but instead will specifically look at genetic variations mostly known to be common, but some rare in the population. We will use a DNA microarray to genotype ~650,000 genetic variations that allow us to capture information about >90% of the genome. As technology improves, the project or NIHR BioResource team may sequence all or part of your genetic code, to get improved coverage of rarer genetic variants. All your genetic data will be stored securely in order to allow us to improve our understanding of the development and treatment of eating disorders, as well as other health studies, as part of the NIHR BioResource.
The NIHR BioResource will provide your genetic data if you request it, and it is available. Please email email@example.com stating that you would like to request your data. Due to the processing time required, the earliest availability for data will be in 2020.
We are only using the genetic data that we extract from your saliva for general research purposes, to improve healthcare and not for individual clinical diagnoses. In the rare instance that we do find something of clinical importance, we will write to your GP recommending further investigation.
The NIHR BioResource Centre Maudsley distributes a biannual newsletter in which we will communicate our findings to members of the EDGI. In addition, we will update members of any new findings on the Useful Links page of the EDGI.
You do not normally have to disclose your research participation to your life insurer including any genetic tests that you have completed during your participation.
Thank you. If you are a journalist, please email firstname.lastname@example.org in the first instance. If you are an organisation please email Dina Monssen with your questions or request.
Developed in Collaboration with BEAT, and with Patients and Service Users
To take part in the Eating Disorders Genetics Initiative, part of the NIHR BioResource, you must:
To sign-up, fill in the form below. We will then send you a confirmation email.
After this, the EDGI enrollment process consists of four steps: