Eating Disorders Clinical Research Network (EDCRN)

UK Eating Disorder services are facing unprecedented demand, with effective service delivery hampered by inadequate resources, fragmented services and variable care pathways. Individuals with eating disorders, families and clinicians all agree on the critical need to improve care pathways and treatment, leading to better outcomes.

Eating disorders are serious, complex conditions influenced by a blend of biological, psychological, and environmental factors. The approach of this project is grounded in the "biopsychosocial" model. Recently, anorexia research confirms a genetic component, with biological, metabolic, and psychological mechanisms at play. Further biological research across eating disorders could allow a better understanding of the mechanisms underlying eating disorder development and better, more personalised treatments.

This project will test the feasibility of establishing 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. It will help address fragmentation and facilitate novel biological, psychological, and social research collaborations. The data the investigators gather will be open to all researchers for data analyses, and the collaborations established will form a collaborative network to enable future clinical trials, experimental medicine and psychology.

The study will be conducted at child and adult eating disorder services who opt to join the Network. Participants will be patients receiving treatment for an eating disorder at one of the participating services, and their parents/guardians if applicable.

Participants will complete questionnaires and have blood and other physical tests as specified in the EDCRN dataset. The study will last until 29th October 2026 (the end of the current funding period) and/or when a participant is discharged from treatment, whichever is sooner. For participants discharged before the study ends, there will be an opportunity for patients to complete optional follow-up questionnaires on a periodic basis.

Study Overview

• Status: Not yet recruiting
• Conditions: Eating Disorders
• Intervention / Treatment: Other: EDCRN questionnaires

• Study Type: Observational
• Enrollment (Estimated): 12000

Contacts and Locations

• Study Contact: Name: Anna Carnegie; Phone Number: 020 7836 5454; Email: anna.carnegie@kcl.ac.uk

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: Child; Adult; Older Adult
• Accepts Healthy Volunteers: N/A

• Sampling Method: Non-Probability Sample

Study Population

The study population are individuals who are receiving treatment for an eating disorder(s) at a UK-based eating disorder service which is part of the EDCRN and (if desired by the patient and caregiver) their parents/guardians.

Description

Inclusion Criteria:

• Patients who have been diagnosed with an eating disorder under at least 1 of the criteria specified in the DSM-5 and/or ICD-9, 10 or 11.
• Patients who are receiving treatment as inpatients, day-patients or outpatients at a CAMHS or Adult service who is participating in the EDCRN.
• Patients who are receiving treatment in the UK.

OR:

• Parents/guardians of patients who have been diagnosed with an eating disorder under at least 1 of the criteria specified in the DSM-5 and/or ICD-9, 10 or 11.
• Parents/guardians of patients who are receiving treatment as inpatients, day-patients or outpatients at a CAMHS or Adult service who is participating in the EDCRN.
• Parents/guardians of patients who are receiving treatment in the UK.

Exclusion Criteria:

• Individuals who do not meet the criteria specified above will be considered ineligible to participate in the EDCRN.

Study Plan

How is the study designed?

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
EDCRN dataset	The existence of a well-described dataset (maintained by at >50% eating disorder services across the UK) of eating disorder presentation, treatment, outcomes, demographics, social risk factors, and blood test results which can be accessed (with appropriate permissions) by researchers and others for the purposes of addressing novel research questions and facilitating service improvement efforts. The EDCRN dataset comprises the following parameters: ED Behaviours/cognitions; Depression; Anxiety; Autism; OCD; Perfectionism; Emotional regulation; Psychosocial impairment; Adverse experiences; Self-injurious behaviour; Food insecurity; Physical/somatic symptoms; ADHD; Alcohol use; PTSD symptoms; Self-administered comorbidity; Weight stigma; Treatment experience; Comorbidities; Caregiver impact; Weight history; Muscle power; Endocrine function; Liver function; Cardiac function; Electrolytes; Bone health; Demographics	29th October 2026

Secondary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Data on treatment effects	Data which provides insights into treatment moderators and mediators for different demographic groups.	29th October 2026
Genetic Biomarkers	Indicators of genetic biomarkers of treatment response.	29th October 2026
Socio-economic influences	Data which indicates socio-economic factors (e.g. the local food environment) influencing ED development, maintenance and outcomes.	29th October 2026

Collaborators and Investigators

• Sponsor: King's College London
• Collaborators: Imperial College London; University College, London; NHS Greater Glasgow and Clyde; Birmingham Women's and Children's NHS Foundation Trust; South London and Maudsley NHS Foundation Trust; Oxford Health NHS Foundation Trust
• Investigators: Principal Investigator: Gerome Breen, PhD, King's College London (KCL); Principal Investigator: Karina Allen, PhD, South London and Maudsley NHS Foundation Trust (SLaM)

Study record dates

Study Major Dates

• Study Start (Estimated): October 1, 2024
• Primary Completion (Estimated): October 29, 2026
• Study Completion (Estimated): October 29, 2026

Study Registration Dates

• First Submitted: July 23, 2024
• First Submitted That Met QC Criteria: August 2, 2024
• First Posted (Estimated): August 5, 2024

Study Record Updates

• Last Update Posted (Estimated): August 5, 2024
• Last Update Submitted That Met QC Criteria: August 2, 2024
• Last Verified: July 1, 2024

More Information

Terms related to this study

• Additional Relevant MeSH Terms: Mental Disorders; Feeding and Eating Disorders
• Other Study ID Numbers: RE22072; MR/X030539/1 (Other Grant/Funding Number: Medical Research Council); 341570 (Other Identifier: Health Research Authority)

Drug and device information, study documents

• Studies a U.S. FDA-regulated drug product: No
• Studies a U.S. FDA-regulated device product: No