Recruitment Sites

At EDGI UK, we are working with NHS recruitment sites (i.e., NHS trusts, GP surgeries, Research Delivery Networks, Non-NHS Organisations, Educational institutions, NIHR Infrastrustructure, National Research Platforms) across the UK (i.e., includes Scotland, Wales, Northern Ireland) England to support the study.

So far, over 7,500 people have signed up, completed their questionnaire and sent back their saliva kit! Please help us to reach our goal of recruiting 10,000 participants by getting involved.

We are still launching new recruitment sites, so please get in touch with us if you are interested. We are looking forward to working alongside you!

Please don’t hesitate to get in touch at EDGIadmin@kcl.ac.uk if you have any questions.

The Eating Disorders Genetics Initiative (EDGI UK) is a research project, funded by the National Institute for Health and Care Research (NIHR) BioResource, that aims to further investigate how genetics and the environment can contribute to eating disorders, in the hope of improving diagnosis and treatment of eating disorders for future generations.

EDGI UK 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 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 UK will act as a valuable resource to advance research in the important area of eating disorders and mental health.

We are aiming to recruit individuals aged 16 years or above who 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 UK website (edgiuk.org) to sign up online. After participants 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 - 40 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, participants will be full participants in EDGI UK.

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

If you are a site looking to support EDGI UK recruitment, you can be involved either as a Recruiting Site, Participant Identification Centre (PIC), or a Promoting Site. Please contact EDGIadmin@kcl.ac.uk / gladadmin@kcl.ac.uk if you would like to register as a site for EDGI UK/GLAD, or if you would like more information.

Recruiting Sites
Recruiting sites will are involved in the active recruitment of patients to join EDGI UK. 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 UK include:

• Advertising and access to data
• Mail-outs (sending letters, emails and/or 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

Recruiting sites will receive accruals for the participants they recruit to EDGI UK.

Participant Identification Centres (PICs)

Note that PIC sites do not receive accruals.

PIC sites involve allowing the study team access to medical records. Members of the EDGI UK Study consent to the study team accessing 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.

Promoting Sites

Note that promoting sites do not receive accruals.

Promoting sites agree to display EDGI UK Study posters and leaflets in waiting rooms and clinical areas as appropriate.

EDGI UK is also recruiting through FREED services and welcomes sites that are a part of the FREED Network.

Please note that recruitment for EDGI UK 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.

EDCRN services are now able to recruit patients into EDGI UK, enabling the linkage of clinical and genetic data across studies. EDCRN services will be provided with information and instructions on how to become an EDGI UK recruiting site.

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

EDCRN sites recruiting into EDGI will accrue additional service support costs.

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

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

Sites that are interested in getting involved with EDGI UK as a recruiting site should follow the link below to register your interest and fill out information about your site.

Please contact the EDGI UK team at EDGIadmin@kcl.ac.uk to register your interest and information about your site and we can add you to our waiting list.

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