Eating Disorders Genetics Initiative
EDGI
2 other identifiers
observational
17,991
3 countries
3
Brief Summary
The overarching intention of the Eating Disorder Genetics Initiative (EDGI) is to lay the foundation for all future genomic discovery in eating disorders--anorexia nervosa (AN), bulimia nervosa (BN), and binge-eating disorder (BED)--by exploring both genetic and behavioral factors. To do this, information will be collected from 4000 people who have provided DNA samples for the Anorexia Nervosa Genetics Initiative (ANGI) and the same information and DNA will be collected from an additional 16,000 people. The goal is to better understand eating disorders and how they relate to each other so that better treatments can be developed.
Trial Health
Trial Health Score
Automated assessment based on enrollment pace, timeline, and geographic reach
participants targeted
Target at P75+ for all trials
Started Jun 2020
Typical duration for all trials
3 active sites
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
First Submitted
Initial submission to the registry
May 4, 2020
CompletedFirst Posted
Study publicly available on registry
May 7, 2020
CompletedStudy Start
First participant enrolled
June 12, 2020
CompletedPrimary Completion
Last participant's last visit for primary outcome
May 31, 2023
CompletedStudy Completion
Last participant's last visit for all outcomes
May 31, 2023
CompletedJune 6, 2023
April 1, 2023
3 years
May 4, 2020
June 2, 2023
Conditions
Keywords
Outcome Measures
Primary Outcomes (2)
Number of Participants Identified with an Eating Disorder Diagnosis by Category
The ED100K 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, 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 ED100K questionnaire (ED100K). Age of onset will be reported for each eating disorder group.
Baseline
Secondary Outcomes (7)
Current eating disorder self-report total sum scores
Baseline
Eating disorder-related quality of life scores
Baseline
Health-related quality of life scores
Baseline
Current depressive symptoms sum score
Baseline
Prevalence of life-time history of major depression
Baseline
- +2 more secondary outcomes
Study Arms (4)
Anorexia Nervosa Case
Participants in this group have a life-time history of anorexia nervosa as determined by an algorithm applied to their responses to an eating disorders screening questionnaire (ED100K) that is based on the Structured Clinical Interview for Axis 1 Disorders.
Bulimia Nervosa Case
Participants in this group have a life-time history of bulimia nervosa as determined by an algorithm applied to their responses to an eating disorders screening questionnaire (ED100K) that is based on the Structured Clinical Interview for Axis 1 Disorders. These participants do not have a history of anorexia nervosa.
Binge-Eating Disorder Case
Participants in this group have a life-time history of binge-eating disorder as determined by an algorithm applied to their responses to an eating disorders screening questionnaire (ED100K) that is based on the Structured Clinical Interview for Axis 1 Disorders. These participants do not have a history of anorexia nervosa or bulimia nervosa.
Control
Participants in this group have no history of disordered eating behaviors as determined by an algorithm applied to their responses to an eating disorders screening questionnaire (ED100K) that is based on the Structured Clinical Interview for Axis 1 Disorders.
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.
Eligibility Criteria
Interested individuals from the United States, Australia, and New Zealand who meet criteria may participate within their respective country.
You may qualify if:
- A lifetime history of anorexia nervosa, bulimia nervosa, binge-eating disorder, or no history of any disordered eating behavior
- Age 15-99 years
You may not qualify if:
- History of subthreshold disordered eating behaviors
Contact the study team to confirm eligibility.
Sponsors & Collaborators
- University of North Carolina, Chapel Hilllead
- National Institute of Mental Health (NIMH)collaborator
- University of Otagocollaborator
- University of Aarhuscollaborator
- QIMR Berghofer Medical Research Institutecollaborator
Study Sites (3)
University of North Carolina
Chapel Hill, North Carolina, 27599-7160, United States
QIMR Berghofer
Brisbane, Queensland, Australia
University of Otago
Christchurch, Canterbury, New Zealand
Related Publications (2)
Watson HJ, Schaumberg K, Thornton LM, Kennedy HL, Ong SH, Roche P, Barnhart WR, Pauley-Gadd SB, Costello K, Flatt RE, Birgegard A, Dinkler L, Abbaspour A, Mantilla EF, Monell E, Frans EM, Barakat S, Pettie MA, Parker R, Maguire S, Jordan J, Kennedy MA, Bulik CM. Maladaptive Exercise in People With a Lifetime History of Eating Disorders: A Multicountry Observational Study. Int J Eat Disord. 2026 Jan;59(1):190-204. doi: 10.1002/eat.24563. Epub 2025 Oct 20.
PMID: 41115789DERIVEDBulik CM, Thornton LM, Parker R, Kennedy H, Baker JH, MacDermod C, Guintivano J, Cleland L, Miller AL, Harper L, Larsen JT, Yilmaz Z, Grove J, Sullivan PF, Petersen LV, Jordan J, Kennedy MA, Martin NG. The Eating Disorders Genetics Initiative (EDGI): study protocol. BMC Psychiatry. 2021 May 4;21(1):234. doi: 10.1186/s12888-021-03212-3.
PMID: 33947359DERIVED
Biospecimen
Participants from the United States, Australia, and New Zealand will be asked to submit a saliva sample using standard industry collection tubes. DNA will be isolated from these samples. DNA will be isolated from blood spots obtained at birth from participants in Denmark.
MeSH Terms
Conditions
Condition Hierarchy (Ancestors)
Study Officials
- PRINCIPAL INVESTIGATOR
Cynthia M Bulik, PhD
University of North Carolina, Chapel Hill
Study Design
- Study Type
- observational
- Observational Model
- CASE CONTROL
- Time Perspective
- RETROSPECTIVE
- Sponsor Type
- OTHER
- Responsible Party
- SPONSOR
Study Record Dates
First Submitted
May 4, 2020
First Posted
May 7, 2020
Study Start
June 12, 2020
Primary Completion
May 31, 2023
Study Completion
May 31, 2023
Last Updated
June 6, 2023
Record last verified: 2023-04
Data Sharing
- IPD Sharing
- Will share
- Shared Documents
- STUDY PROTOCOL
- 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.
Anonymized data and scripts will be made available to the general scientific community at the conclusion of the investigation. Specifically, phenotype data 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.