NCT06594913

Brief Summary

The overarching intention of the Eating Disorder Genetics Initiative 2 (EDGI2) is to increase sample size, diversity, and eating disorder phenotypes. The investigators are enrolling 20,000 new participants with anorexia nervosa (AN), bulimia nervosa (BN), binge-eating disorder (BED), avoidant/restrictive food intake disorder (ARFID), and controls in the US, Mexico, Australia, New Zealand, Sweden, and Denmark. A primary study goal is to enroll at least 30% of participants from underrepresented groups. Participants are asked to complete a series of questionnaires and submit a saliva sample for genotyping. The goal is to better understand eating disorders and how they relate to each other so that better treatments can be developed.

Trial Health

83
On Track

Trial Health Score

Automated assessment based on enrollment pace, timeline, and geographic reach

Enrollment
20,000

participants targeted

Target at P75+ for all trials

Timeline
15mo left

Started Oct 2024

Typical duration for all trials

Geographic Reach
5 countries

5 active sites

Status
recruiting

Health score is calculated from publicly available data and should be used for screening purposes only.

Trial Relationships

Click on a node to explore related trials.

Study Timeline

Key milestones and dates

Study Progress55%
Oct 2024Aug 2027

First Submitted

Initial submission to the registry

September 10, 2024

Completed
9 days until next milestone

First Posted

Study publicly available on registry

September 19, 2024

Completed
1 month until next milestone

Study Start

First participant enrolled

October 28, 2024

Completed
2.8 years until next milestone

Primary Completion

Last participant's last visit for primary outcome

August 1, 2027

Expected
Same day until next milestone

Study Completion

Last participant's last visit for all outcomes

August 1, 2027

Last Updated

May 31, 2025

Status Verified

May 1, 2025

Enrollment Period

2.8 years

First QC Date

September 10, 2024

Last Update Submit

May 30, 2025

Conditions

Keywords

severe and enduring eating disordergeneticsmental healthdisordered eatingenvironmental factors

Outcome Measures

Primary Outcomes (2)

  • Number of Participants Identified with an Eating Disorder Diagnosis by Category

    The ED100Kv4 is a web-based diagnostic questionnaire, based on the Structured Clinical Interview for Axis 1 Disorders, that applies algorithms to participant responses. The number of participants with each diagnosis (AN, BN, BED, ARFID, and control) will be reported.

    Baseline

  • Age of eating disorder onset

    Age of eating disorder onset will be considered as the age of first eating disorder symptom as self-reported in the ED100Kv4 questionnaire (ED100K). Age of onset will be reported for each eating disorder group.

    Baseline

Secondary Outcomes (9)

  • Current Disordered Eating Symptoms

    Baseline

  • Mental Health and Behavior

    Baseline

  • Mood - Lifetime history of mood and anxiety disorders

    Baseline

  • Self-Violence

    Baseline

  • Lifetime Substance Use

    Baseline

  • +4 more secondary outcomes

Study Arms (5)

Anorexia nervosa

Individuals with a self-reported lifetime history of anorexia nervosa.

Other: Eating disorder diagnosis group

Bulimia nervosa

Individuals with a self-reported lifetime history of bulimia nervosa.

Other: Eating disorder diagnosis group

Binge-eating disorder

Individuals with a self-reported lifetime history of binge-eating disorder.

Other: Eating disorder diagnosis group

ARFID

Individuals with a self-reported lifetime history of avoidant restrictive food intake disorder.

Other: Eating disorder diagnosis group

Control

Individuals with no history of disordered eating behaviors or symptoms

Other: Eating disorder diagnosis group

Interventions

This is an observational study, no active intervention is applied. Participants are assigned to an eating disorder diagnosis group based on their lifetime history of disordered eating behaviors and symptoms.

ARFIDAnorexia nervosaBinge-eating disorderBulimia nervosaControl

Eligibility Criteria

Age12 Years - 99 Years
Sexall
Healthy VolunteersYes
Age GroupsChild (0-17), Adult (18-64), Older Adult (65+)
Sampling MethodNon-Probability Sample
Study Population

Interested individuals from the United States, Mexico, Australia, New Zealand, and Sweden who meet criteria may participate within their respective country.

You may qualify if:

  • A lifetime history of anorexia nervosa, bulimia nervosa, binge-eating disorder, avoidant restrictive food intake disorders or no history of any disordered eating behavior, based on DSM-5 criteria algorithms
  • Age 12-99 years, depending on country. (US enrollment age is 18-99)

You may not qualify if:

  • History of subthreshold disordered eating behaviors.

Contact the study team to confirm eligibility.

Sponsors & Collaborators

Study Sites (5)

University of North Carolina at Chapel Hill

Chapel Hill, North Carolina, 27599-7160, United States

RECRUITING

QIMR Berghofer

Brisbane, Queensland, Australia

RECRUITING

Comenzar de Nuevo

Monterrey, Mexico

RECRUITING

University of Otago

Christchurch, Canterbury, New Zealand

RECRUITING

Karolinska Institutet

Stockholm, Sweden

RECRUITING

Related Publications (1)

  • Berthold N, MacDermod CM, Thornton LM, Parker R, Morales SAC, Hog L, Kennedy HL, Guintivano J, Sullivan PF, Crowley JJ, Johnson JS, Birgegard A, Fundin BT, Frans E, Xu J, Ngati Pukenga MP, Miller AL, Aguilar MV, Barakat S, Abdulkadir M, White JP, Larsen JT, Trujillo E, Winterman B, Zhang R, Lawson R, Wonderlich S, Wonderlich J, Schaefer LM, Mehler PS, Oakes J, Foster M, Gaudiani J, Vacuan ETC, Compte EJ, Petersen LV, Yilmaz Z, Micali N, Jordan J, Kennedy MA, Maguire S, Huckins LM, Lu Y, Dinkler L, Martin NG, Bulik CM. The Eating Disorders Genetics Initiative 2 (EDGI2): study protocol. BMC Psychiatry. 2025 May 26;25(1):532. doi: 10.1186/s12888-025-06777-5.

Biospecimen

Retention: SAMPLES WITH DNA

Saliva samples will be collected for DNA extraction. Both saliva samples and DNA will be retained in biorepositories.

MeSH Terms

Conditions

Anorexia NervosaBulimia NervosaBinge-Eating DisorderAvoidant Restrictive Food Intake DisorderPsychological Well-Being

Condition Hierarchy (Ancestors)

Feeding and Eating DisordersMental DisordersPersonal SatisfactionBehavior

Study Officials

  • Cynthia Bulik, PhD

    University of North Carolina, Chapel Hill

    PRINCIPAL INVESTIGATOR

Central Study Contacts

Laura M Thornton, PhD

CONTACT

Casey MacDermod, BA

CONTACT

Study Design

Study Type
observational
Observational Model
CASE CONTROL
Time Perspective
OTHER
Sponsor Type
OTHER
Responsible Party
SPONSOR

Study Record Dates

First Submitted

September 10, 2024

First Posted

September 19, 2024

Study Start

October 28, 2024

Primary Completion (Estimated)

August 1, 2027

Study Completion (Estimated)

August 1, 2027

Last Updated

May 31, 2025

Record last verified: 2025-05

Data Sharing

IPD Sharing
Will share

Anonymized data and scripts will be made available to the general scientific community at the conclusion of the investigation. Specifically, phenotype data from the United States, Mexico, Australia, and New Zealand will be submitted to the database of Genotypes and Phenotypes (dbGaP) and National Institute of Mental Health Repository \& Genetics Resource (NRGR) and genotype data to dbGaP. Data from Sweden will be made available on the Federated European Genome-phenome Archive.

Shared Documents
STUDY PROTOCOL, ICF
Time Frame
Assessment phenotype data will be submitted within 6 months after the end of the study. Genotype data will be submitted after the first set of analyses with these data are complete. All data will be available as long as the repositories maintain the datasets (indefinitely).
Access Criteria
The databases are controlled-access meaning that individuals who wish to have access to the data must apply to the respective repository and meet all of their criteria.
More information

Locations