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Reposted by EDCRN (Eating Disorders Clinical Research Network)

Dump The Scales @dumpthescales.bsky.social · 9d

📢New blog alert📢

@annacarnegie.bsky.social from @edcrn.bsky.social talks about the importance of trust in treatment, and how being treated as a unique individual with different interests and hopes for the future helped her recover from anorexia.

www.dumpthescales.org/post/seven-p...

Seven positives I took away from eating disorder treatment

Anna Carnegie, researcher and person with lived experience of eating disorders and OCD writes about the positives she took away from Eating Disorder Treatment

www.dumpthescales.org

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EDCRN (Eating Disorders Clinical Research Network) @edcrn.bsky.social · 22d

🔬 This week’s journal club is a paper authored by EDCRN’s co-principal investigator, Dr Karina Allen! The paper looks at the effect of early interventions on young people with eating disorders.

To read the paper, see 👉 pubmed.ncbi.nlm.nih.gov/40878998/

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EDCRN (Eating Disorders Clinical Research Network) @edcrn.bsky.social · Aug 22

🔬This week's journal club is a paper by James Downs, a member of our Lived Experience Steering Committee, and Clive Kelly, with some fascinating insights into Anorexia Nervosa in males. To see the full paper, see here 👉 www.magonlinelibrary.com/doi/full/10....

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EDCRN (Eating Disorders Clinical Research Network) @edcrn.bsky.social · Aug 4

Read the full paper 👉 onlinelibrary.wiley.com/doi/10.1002/...

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EDCRN (Eating Disorders Clinical Research Network) @edcrn.bsky.social · Aug 4

This week's journal club features a paper from our excellent colleague and PhD researcher, Saakshi Kakar, in which she conducted a large-scale analysis of under-recognised weight loss behaviours in individuals with eating disorders.

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Reposted by EDCRN (Eating Disorders Clinical Research Network)

Medical Research Foundation @medresfdn.bsky.social · Jul 31

Currently, eating disorder services do not collect consistent routine data, which means we have limited knowledge of the effectiveness of care.

Funded by us, a new study has identified a standardised dataset to be collected by a clinical research network in the UK, EDCRN (@edcrn.bsky.social). [1/3]

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EDCRN (Eating Disorders Clinical Research Network) @edcrn.bsky.social · Jul 25

💙To read the brilliant paper, click the link below or check out our Linktree Journal Club Collection!
kclpure.kcl.ac.uk/portal/en/pu...

Agreeing a set of biopsychosocial variables for collection across the UK Eating Disorders Clinical Research Network (EDCRN): A consensus study using adapted nominal group technique

kclpure.kcl.ac.uk

EDCRN (Eating Disorders Clinical Research Network) @edcrn.bsky.social · Jul 25

💙 Quote from a Lived Experience Representative from the Children & Young Persons workshop: “Relationship building is key before jumping into questionnaires. It’s important to reduce shame and build trust, particularly for people who feel vulnerable.”

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EDCRN (Eating Disorders Clinical Research Network) @edcrn.bsky.social · Jul 25

💙 Theme 4: Doing no harm. The treatment process should help, not overwhelm or shame patients. The EDCRN platform allows participants to complete questionnaires in their own time, at their own pace.

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EDCRN (Eating Disorders Clinical Research Network) @edcrn.bsky.social · Jul 25

💙 Quote from a clinician in the adult workshop: “When data collection isn't standardised, it not only affects the quality-of-care patients receive but also the quality of research that relies on that data.”

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EDCRN (Eating Disorders Clinical Research Network) @edcrn.bsky.social · Jul 25

💙 Theme 3: A Balance Between Standardization and Individualisation. There is a need for standardised yet flexible data collection to personalise care for each patient. The questionnaires on the platform include optional q’aires for participants who find them particularly relevant

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EDCRN (Eating Disorders Clinical Research Network) @edcrn.bsky.social · Jul 25

💙 Quote from a Lived Experience Representative in the adult workshop: “Autism screening should be part of eating disorders and assessment. Personally, that's my feeling.”

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EDCRN (Eating Disorders Clinical Research Network) @edcrn.bsky.social · Jul 25

💙 Theme 2: A holistic approach. The EDCRN understands that eating disorders are a biopsychosocial condition, so we collect data on psychological, social and physical factors like trauma, autism, health conditions, weight stigma and food insecurity.

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EDCRN (Eating Disorders Clinical Research Network) @edcrn.bsky.social · Jul 25

💙 Quote from a Lived Experience Representative in the adult workshop: “The other thing I think is quite important is the waiting time for treatment, because in my experience it seems to be the longer the wait is, the more severe symptoms tend to be by the time they get seen.”

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EDCRN (Eating Disorders Clinical Research Network) @edcrn.bsky.social · Jul 25

💙 Theme 1: A mutually valued and beneficial collaboration. The data collected by ED services should be meaningful & help patients and others involved, so the EDCRN collects information, like waiting times, distance travelled for treatment, which patients have highlighted as issues.

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EDCRN (Eating Disorders Clinical Research Network) @edcrn.bsky.social · Jul 25

💙 Following the consensus building workshops, the EDCRN team identified four key themes. Read the thread below to find out these themes and how we implemented them into the EDCRN dataset. 🧵👇

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EDCRN (Eating Disorders Clinical Research Network) @edcrn.bsky.social · Jul 21

Read the paper here 👉 kclpure.kcl.ac.uk/portal/en/pu...

Agreeing a set of biopsychosocial variables for collection across the UK Eating Disorders Clinical Research Network (EDCRN): A consensus study using adapted nominal group technique

kclpure.kcl.ac.uk

EDCRN (Eating Disorders Clinical Research Network) @edcrn.bsky.social · Jul 21

🚨 Exciting news 🚨

Our paper on the development of the EDCRN dataset, created through consensus-building workshops, has now been published! 🎉The team held two workshops to agree on the information that should be collected in the dataset. Find out our consensus activities below🧵👇

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EDCRN (Eating Disorders Clinical Research Network) @edcrn.bsky.social · Jul 4

📩Read the full research article here: www.mdpi.com/3292992 Stay tuned for more journal club content from the EDCRN team!

www.mdpi.com

EDCRN (Eating Disorders Clinical Research Network) @edcrn.bsky.social · Jul 4

💫 When agreeing for the data to be collected in EDCRN, the importance of adaptations for autistic people in ED treatment was highlighted. We reflect this in our dataset through the inclusion of questionnaires which ask about autism and capturing where the PEACE pathway is being implemented.

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EDCRN (Eating Disorders Clinical Research Network) @edcrn.bsky.social · Jul 4

🙌 The article also highlighted the importance of lived experience collaboration, community engagement and improving training in autism-informed care.

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EDCRN (Eating Disorders Clinical Research Network) @edcrn.bsky.social · Jul 4

✅ This includes eight domains, such as: individualised care planning, adapting treatment to meet autistic people’s needs, and sensory modification. This is a practical framework for services to integrate contextually-sensitive adaptations to the care they provide.

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EDCRN (Eating Disorders Clinical Research Network) @edcrn.bsky.social · Jul 4

📋 From these findings, researchers developed a checklist for services to use, to help them to identify how to make their treatments more inclusive and accessible to autistic people, and how services can overcome challenges to implementing PEACE.

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EDCRN (Eating Disorders Clinical Research Network) @edcrn.bsky.social · Jul 4

🤲This research found that PEACE supported autistic people to engage in personalised treatment, and that professionals working with them felt more confident in providing autism-informed care.

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EDCRN (Eating Disorders Clinical Research Network) @edcrn.bsky.social · Jul 4

🤝 A participatory approach was employed to co-design PEACE with autistic people with lived experience of EDs, clinicians, carers and researchers.

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