EDCRN (Eating Disorders Clinical Research Network)

This week’s journal club highlights a study exploring what parents and caregivers feel supports real change in family therapy for anorexia.
Their insights highlight the crucial role families play in recovery.

Read more in our Linktree! ☝️

Curious about what it means to be part of EDCRN?
✨Here’s a glimpse of what joining the EDCRN as a site will look like!
To learn more or express interest, email edcrn@kcl.ac.uk

🎗️Awareness is the first step towards change.
Men deserve to be included, feel seen, and feel supported.

At EDCRN, we’re pushing for better understanding, recognition, and treatment of eating disorders in men 💚

#edcrn #eatingdisorders #eatingdisordersresearch #mensmentalhealth

Help shape the future of Eating Disorders! 📃

🔗 Take part in our survey now, link in bio

Closes: 16th Nov, Midnight

#eatingdisorderresearch #eatingdisoder #edcrn #researchmatters #edawareness #mentalhealth

Say hello 👋 to our placement students!

We are excited to have them on board. 🎉 Welcome to the team! #EDCRN @edgiuk.bsky.social @gladstudy.bsky.social #EatingDisorder

Are you interested in eating disorders funding and research?🔬
Please help us develop some key messaging to deliver to stakeholders to help increase investment in eating disorder research by completing the following survey!
qualtrics.kcl.ac.uk/jfe/form/SV_...

A valuable read from @ameaustin.bsky.social and @karina-maudsley.bsky.social on the importance of collecting routine outcome measures in eating disorders - and the potential of this to tranform care for individuals affected 🫶🏻🤍

🔬This week’s journal club ➡️ Our co-principal investigator, Dr Karina Allen, recently published this paper on why routine outcome measurement is key in the eating disorders field.

Read the paper here: pubmed.ncbi.nlm.nih.gov/40640949/

Happy World Mental Health Day! 🧠

The theme this year is ‘Access to Services - Mental Health in Catastrophes and Emergencies’.

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

📢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...

🔬 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/

🔬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....

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

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.

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]

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

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

💙 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.”

💙 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.

💙 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.”

💙 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

💙 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.”

💙 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.

💙 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.”

💙 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.

💙 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. 🧵👇

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

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

🚨 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🧵👇

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

💫 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.

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