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Health

Eating Disorders Clinical Research Network

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. 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 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. It will help address fragmentation and facilitate novel biological, psychological, and social research collaborations. The data gathered through this project will be open to all researchers for data analyses, and the collaboration we establish will form a collaborative network to enable future clinical trials, experimental medicine, and psychology.

Co-Principal Investigators:
  • Professor Gerome Breen (King's)
  • Dr Karina Allen (King's/South London and Maudsley NHS Trust)
Co-Investigators
  • Dr Stephen Anderson (NHS Forth Valley; Scottish lead)​
  • Dr Agnes Ayton (Oxford University)​
  • Professor Sarah Byford (King's)​
  • Dr Moritz Herle (King's)​
  • Dr Tom Jewell (King's)​
  • Professor Sabine Landau (King's)​
  • Dr Clare Llewellyn (King's)​
  • Dr Sheryllin McNeil (Forward Thinking Birmingham)​
  • Dr Dasha Nicholls (Imperial College London)​
  • Professor Ulrike Schmidt (King's/South London and Maudsley NHS Trust)
Study Coordinator
  • Anna Carnegie (King's)
Lived Experience Steering Committee
  • Suzanne Baker​
  • James Downs​
  • Jess Griffiths​
  • Marilyn Okoro​
  • Hope Virgo

Aims

  • Consider treatment outcomes across services, helping to more effectively identify the reasons why some treatments may work better than others, and for whom.
  • Identify and learn more about underserved groups by attending to the demographic characteristics of patients.
  • Understand how illness duration relates to treatment outcome and progress age and stage-specific adaptations to eating disorder care.

Methods

  • Establish an advisory panel, consisting of people with lived experience and carers, to input into and co-produce each of the aims throughout the project and to form long term PPIE infrastructure.
  • Create an agreed standard recording methodology for demographics, duration of illness, treatment, outcome measures, and blood test results for eating disorders across adult and child NHS eating disorder services.
  • Test feasibility and then enrol >50% of NHS treatment services for eating disorders, with routine standardised data systematically gathered in NHS authorised central secure computer services for approved researchers to use.
  • Recruit a subset of 1000 patients, and establish a leading eating disorder biobank for blood-based studies of proteins, hormones, and other biomarkers through enrolment and blood sampling via the NIHR BioResource UK Eating Disorders Genetics Initiative.