Actively Recruiting

Age: 14Years +
All Genders
ID06752304

A Longitudinal Study of Severe and Enduring Eating Disorders

Led by Uppsala University Hospital · Updated on 2024-12-31

800

Participants Needed

1

Research Sites

987 weeks

Total Duration

On this page

Sponsors

U

Uppsala University Hospital

Lead Sponsor

F

Forte

Collaborating Sponsor

AI-Summary

What this Trial Is About

Researchers are studying Severe and Enduring Eating Disorders (SEED), which are long-lasting eating disorders affecting adolescents and adults. The study aims to understand the clinical, psychological, and biological factors that contribute to the development and persistence of SEED. It follows two groups of patients, one aged 14-17 and one aged 18 and older, to observe changes and impacts over time. Participants will be followed at multiple points: at the start (baseline), after treatment, two years later, and then at five, 10, and 20 years after baseline. During these times, they will undergo physical exams, provide blood samples, participate in interviews, and complete questionnaires. Caregivers of minors will also complete questionnaires. The study collects extensive data on psychiatric symptoms, personality, emotion regulation, loneliness, and inflammatory markers. Throughout the study, participants will be assessed with various interviews and questionnaires to measure eating disorder symptoms, psychosocial functioning, quality of life, and biological markers. Weekly weight checks occur during treatment and follow-up. Researchers will analyze how different factors influence the course of the disorder and treatment outcomes. The study may last up to 20 years for some participants and includes regular digital questionnaire responses and registry data reviews.

CONDITIONS

Brief Title

A Longitudinal Study of Severe and Enduring Eating Disorders

Who Can Participate

Age: 14Years +
All Genders

Eligibility Criteria

Eligible

You may qualify if you...

  • Meet the criteria for an eating disorder
  • Be in need of treatment for the eating disorder
  • Provide written informed consent (minors must have consent from all caregivers and themselves)
Not Eligible

You will not qualify if you...

  • Eating disorder symptoms requiring emergency care
  • High risk for suicide
  • Unable to respond to questionnaires, for example due to lack of Swedish language skills

AI-Screening

AI-Powered Screening

Complete this quick 3-step screening to check your eligibility

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Your Study Journey

Screening

Duration - 2 to 4 weeks

Participants are screened for eligibility to participate in the trial.

1 visit (in-person)

Baseline Assessment

Duration - At enrollment

Participants undergo initial assessments including clinical history, diagnostic interviews, physical examinations, and questionnaires to collect data on eating disorder symptoms, personality traits, emotion regulation, loneliness, and biomarkers.

1 visit (in-person)

Treatment Period

Duration - Variable duration depending on individual treatment course

Participants receive treatment for their eating disorder while clinical, psychological, and physical data are collected, including weekly weight measurements and monitoring of treatment completion or dropout.

Weekly visits during treatment

Post-Treatment Assessment

Duration - Immediately after treatment or dropout

After treatment completion or dropout, participants complete questionnaires and assessments similar to baseline to evaluate changes in symptoms and other factors.

1 visit (in-person) or digital questionnaire

Two-Year Follow-Up

Duration - At 2 years post-baseline

Participants complete follow-up assessments including clinical interviews, physical examinations, questionnaires, and biomarker collection to monitor changes over time.

1 visit (in-person) and digital questionnaires

Long-Term Monitoring

Duration - At 5, 10, and 20 years post-baseline

Participants are followed up at 5, 10, and 20 years post-baseline through national health registers and digital questionnaires to assess long-term outcomes related to eating disorders and associated factors.

Digital questionnaires and registry data retrieval

Trial Site Locations

Total: 1 location

1

Uppsala University Hospital

Uppsala, Sweden, 75185

Actively Recruiting

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Research Team

M

Martina Isaksson, PhD

How is the study designed?

Study Type

OBSERVATIONAL

Masking

N/A

Allocation

N/A

Model

N/A

Primary Purpose

N/A

Number of Arms

2

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Published Research Related To This Trial

Social Disconnectedness, Loneliness, and Mental Health Among Adolescents in Danish High Schools: A Nationwide Cross-Sectional Study.

Ziggi Ivan Santini, Veronica S C Pisinger, Line Nielsen...

https://pubmed.ncbi.nlm.nih.gov/33927599

Emotion generation and regulation in anorexia nervosa: a systematic review and meta-analysis of self-report data.

Anna Oldershaw, Tony Lavender, Hannah Sallis...

https://pubmed.ncbi.nlm.nih.gov/26043394

Research Review: What we have learned about the causes of eating disorders - a synthesis of sociocultural, psychological, and biological research.

Kristen M Culbert, Sarah E Racine, Kelly L Klump

https://pubmed.ncbi.nlm.nih.gov/26095891