Coronavirus Update

All sites should comply with any regulations that your organisation has put into place in regard to COVID-19.

EDGI launched in early 2020 but has suffered delays in recruiting from Trusts due to the pandemic. We are now in the position to begin active recruitment again, and we are looking forward to welcoming and working alongside you! Please note that due to limited staff capacity, it may take a considerable amount of time to launch a site.

So far, over 4,500 people have signed up and completed their questionnaire! Please help us to reach our goal of recruiting 10,000 participants by getting involved…

Please don’t hesitate to get in touch if you have any questions. Our team will be available to answer any participant queries or questions that you may have, but please be aware that we are managing other COVID-related projects and there may be a delay getting back to you. We apologise in advance for any inconvenience.

About the Eating Disorders Genetics Initiative Study

The Eating Disorders Genetics Initiative (EDGI) is a research project, funded by the NIHR Bioresource, that aims to further investigate the link between genetics and eating disorders in the hope of improving diagnosis and treatment of eating disorders for future generations.  

EDGI aims to achieve this by recruiting 10,000 people who have experienced eating disorder(s) at any point in their lives. Through this, they will join the National Institute of Health Research (NIHR) Mental Health BioResource, a re-contactable biobank of volunteers who have provided phenotypical as well as biological (genetic) data. The biological samples linked with clinical data provided to EDGI will act as a valuable resource to advance research in the important area of eating disorders and mental health.

Participant Recruitment

We are aiming to recruit individuals aged 16 years or above that have experienced any eating disorder(s). They do not need a formal diagnosis to take part; lived experience is sufficient.

Participants will be directed to the EDGI website (https://edgiuk.org) to sign-up online. After patients have registered on the website, they will be able to read through the information sheet, electronically sign the consent form, and complete core psychological screening questionnaires online. This will take approximately 30 minutes. If participants are eligible, they will then receive a saliva kit in the post so that a biological sample can be collected at home and sent back to the lab via a prepaid return envelope. Once their kit has been received, patients will be full members of EDGI. 

Members of EDGI will have access to useful links and resources, they will be able to view ongoing research projects, and can volunteer to sign up online to studies which they are eligible for. They may also be contacted by the EDGI or BioResource teams about future research projects, which they may want to participate in. If at any point a member decides they do not want to be part of EDGI or the NIHR BioResource, they can withdraw and ask for their sample and questionnaire data to be destroyed.

NHS Involvement

Participant Identification Centres (PICs)

Please note that PIC sites do not receive accruals for EDGI.

Advertising Sites

Advertising sites agree to display EDGI posters and leaflets in waiting rooms and clinical areas as appropriate. The study team would prefer that all advertising sites also be data sites (see below).

Data Sites

Data sites involve allowing the study team access to medical records. Participants of EDGI consent to access of their medical records, including hospital and GP records. The study team are planning to access clinical data centrally through NHS Digital to avoid burdening individual Trusts and services. If data needs to be collected at individual sites, the exact procedures for how this can be done as well as what funding and support may be needed can be discussed to ensure it is feasible for each site. 

Recruiting Sites

Recruiting sites will be involved in active recruitment of patients to join EDGI. Since the study is designed to be an online resource, involvement and support of the study by NHS Trusts and clinical services can be accomplished at varying levels of involvement. Recruitment methods for EDGI include: 

• Advertising and access to data
• Mail-outs (letters, emails, SMS) 
• In-person or over-the-phone recruitment of participants
• A local research team which assists patients in reading through study information, consenting, completing the questionnaire, and perhaps also in providing a saliva sample

Individual sites can decide on their own level of involvement.

First Episode Rapid Early Intervention for Eating Disorders (FREED) Services

EDGI is also recruiting through FREED services and is prioritising sites that are a part of the FREED Network. If your trust is involved in the FREED Network, please let us know and we will be able to move you up the waiting list to fast-track your launch process.

Please note that recruitment for EDGI is not limited to FREED services, and trusts can use more than one method or site of recruitment. Trusts with FREED services can also recruit through other clinics.

EDGI Study Team Responsibilities

The EDGI team are available to answer any questions or concerns from NHS sites. The team can be contacted directly at EDGIadmin@kcl.ac.uk.

The EDGI team will provide training materials to teach local delivery teams about the study protocol and sign-up process. The EDGI team will also schedule phone calls or video conferences to discuss the study and answer any remaining questions. 

How to Get Involved

Sites that are interested in getting involved with EDGI, either as a data, advertising, or recruiting site, should contact the EDGI team at EDGIadmin@kcl.ac.uk to express interest and get added to our waiting list. 

Or click below to register and fill out your site’s information:

Once our team has capacity to launch your site, we can then begin discussions with the local R&D department regarding the feasibility of launching EDGI and the details of patient recruitment, on-site staff involvement, and linkage with medical records.

Questions?

Please head over to the next page to find some FAQs we’ve received from sites. If you have other questions that aren’t covered, please email us at EDGIadmin@kcl.ac.uk.