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Looking for UK based carers to join an advisory panel

The Eating Disorders Clinical Network (EDCRN) is a research project run by King’s College London which aims to establish a UK-wide NHS research network spanning child and adult eating disorder services to enable a step change in the ability to conduct eating disorder research. The Steering Group is compromised of researchers, clinicians and those with lived experience.

We are currently in the process of establishing a Carers and Supporters Advisory Panel in conjunction with FEAST, to input into and coproduce each of the aims for the duration of the project and to help form the long term PPIE infrastructure.

‘The collaboration we establish will form a collaborative network to enable future clinical trials (and to) further biological research across eating disorders could provide a better understanding of the mechanisms underlying eating disorder development and better, more personalised treatments.

We are looking for up to 10 people who consider themselves a carer or supporter of someone who has, or has had, an eating disorder. This includes parents, partners, siblings, friends. To take part in this opportunity, you will need to be over 18 and based in the UK. We are interested in hearing from people who have had positive, mixed, or negative experiences of eating disorder services, and people whose loved one(s) have not been seen in eating disorder services at all. This includes people without a formal diagnosis. We are also interested in hearing from people whose loved one has living / current eating disorder experience as well as those whose loved ones consider themselves to be recovered from an eating disorder.

For additional information,  here is the overview of the whole research project – https://www.kcl.ac.uk/research/eating-disorders-clinical-research-network

You can also view the information gathered from the lived experience (both patients and carers) focus groups we held earlier this year https://www.kcl.ac.uk/ioppn/assets/pdfs/what-information-should-ed-services-collect.pdf

2 Comments

  1. Sarah Woolley

    My daughter (20 yrs old) has AN. Diagnosed in 2020 weight restored. AN is back with a vengeance and it’s a tough time for Katie and also myself. Very interested in taking part if you would like to hear our story so far because to me AN never ever fully goes away.

    • Judy Krasna

      If you’d like to take part, please click the link in the post to reach the organizers. They won’t see it here.

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