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To view this information in PDF format, please download the site information sheet by clicking the button below. Please note that the FAQs at the bottom of this page are not included in the PDF document.

  

Coronavirus Update

The EDGI Study launched in early 2020 but has suffered delays to 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 you!

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…

About the Eating Disorders Genetics Initiative Study

The Eating Disorders Genetics Initiative (EDGI) study 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. 
Participants can sign up by reading our online information and providing consent to fill out our online questionnaire which takes approximately 30-60 minutes. After the questionnaire, participants will be screened for eligbility and if eligible they will be sent a freepost saliva kit, which we provide, to send back to us.  

Participants of the EDGI study will also become members of 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 with the linked clinical data provided to the EDGI study 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 experienced is sufficient.

Participants will be directed to the EDGI Study website (https://edgiuk.org) to sign-up online. After patients have registered to the site, they will be able to read through the information sheet, electronically sign the consent form, and complete core psychological screening questionnaires online. 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 freepost. Once their kit has been received, patients will be full members of the EDGI Study. 

Members of the EDGI Study 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 Study or BioResource teams about future research projects, for 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 Study 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 the EDGI Study 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 the EDGI Study. 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.

EDGI Study Team Responsibilities

The EDGI Study team are also available to answer any patient questions or concerns, therefore all patients who want more information can be directed to contact the EDGI Study team directly. Our contact details are available on this website at www.edgiuk.org/contact/.

The EDGI Study 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 the EDGI Study, either as a data, advertising, or recruiting site, should contact the EDGI Study 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 the EDGI Study and the details of patient recruitment, on-site staff involvement, and linkage with medical records.

Questions?

Below please 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.

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