Completed Research Studies
Anorexia Nervosa Genetics Initiative (ANGI)
The Anorexia Nervosa Genetics Initiative (ANGI), an initiative of The Klarman Family Foundation, was at the time the largest and most rigorous genetic investigation of eating disorders ever conducted. Dr. Cynthia Bulik at the University of North Carolina at Chapel Hill was the lead investigator of ANGI with collaborators from Karolinska Institutet, Stockholm, Sweden (Dr. Mikael Landén), Aarhus University, Aarhus, Denmark (Dr. Preben Bo Mortensen), and Berghofer Queensland Institute for Medical Research, Brisbane, Australia (Dr. Nick Martin) with assistance from the University of Otago, Christchurch, New Zealand (Drs. Martin Kennedy and Jenny Jordan).
ANGI represented a global effort to detect genetic variation that contributes to this potentially life-threatening illness. In total, ANGI collected biological samples and clinical information from 13,363 individuals with anorexia nervosa as well as healthy controls who were matched by ancestry and geography.
Recruitment for ANGI is currently closed.
Scientific articles about ANGI can be accessed free of charge here:
https://pmc.ncbi.nlm.nih.gov/articles/PMC6779477/ “Genome-wide association study identifies eight risk loci and implicates metabo-psychiatric origins for anorexia nervosa”
https://pmc.ncbi.nlm.nih.gov/articles/PMC6338222/ “The Anorexia Nervosa Genetics Initiative (ANGI): Overview and methods.”
A series of blog posts describes the results and meaning of the ANGI study.
Anorexia Nervosa Genetics Initiative (ANGI) Part 1: The Results, July, 2019
Anorexia Nervosa Genetics Initiative (ANGI) Part 2: The Process, July, 2019
Personal Reflections on What the ANGI Results Mean for Patients, Families and Clinicians Today: Part 4, July, 2019
If you are a researcher interested in accessing data or biological samples from ANGI, click here for details. Genome-wide association study (GWAS) summary statistics are available on the Downloads page of the Psychiatric Genomics Consortium website.
The ANGI team is grateful to all participants worldwide, to the research teams in the USA, Europe, and Australasia who helped create this unprecedented resource, and to all of the clinicians, researchers, bloggers, journalists, family members, advocates, and individuals with lived experienced who joined us in our collaborative effort to make ANGI a reality.
Binge Eating Genetics INitiative (BEGIN)
The BEGIN study is no longer enrolling participants and is in the data analysis phase.
The goal of the BEGIN study was to better understand the genetic factors that may be associated with binge-eating disorder and bulimia nervosa to help us develop better treatments for the millions of people who suffer from these illnesses. Data analysis is still underway.
Scientific articles about BEGIN can be accessed free of charge here:
https://pmc.ncbi.nlm.nih.gov/articles/PMC7298834/ “The Binge Eating Genetics Initiative (BEGIN): study protocol.”
https://pmc.ncbi.nlm.nih.gov/articles/PMC9204566/ “Passive Sensor Data for Characterizing States of Increased Risk for Eating Disorder Behaviors in the Digital Phenotyping Arm of the Binge Eating Genetics Initiative: Protocol for an Observational Study”
https://pubmed.ncbi.nlm.nih.gov/37363967/ “Laxative Abuse Is Associated With a Depleted Gut Microbial Community Structure Among Women and Men With Binge-Eating Disorder or Bulimia Nervosa: The Binge Eating Genetics Initiative”
https://pmc.ncbi.nlm.nih.gov/articles/PMC9357123/ “Retention, engagement, and binge‐eating outcomes: Evaluating feasibility of the Binge‐Eating Genetics Initiative study”
https://pmc.ncbi.nlm.nih.gov/articles/PMC4700507/ “Couple-based interventions for adults with eating disorders”
Uniting Couples in the Treatment of Eating Disorders (UNITE)
Drs. Cynthia Bulik, Don Baucom, and Jennifer Kirby have developed and tested a suite of interventions for couples in which one or both members is suffering frtom anorexia nervosa, bulimia nervosa, or binge-eating disorder. Dr. Mae Lynn Reyes-Rodrígez also culturally adapted UNITE for the Latinx population in a treatment called PAS: Promoviendo una Alimentación Saludable.
You are now able to access an online training for both basics in couple-based cognitive-behavioral therapy (CBCT) and UNITE in specific. The initial couple-based treatment for anorexia nervosa was called UCAN (Uniting Couples in the treatment of Anorexia Nervosa), but we have united all three interventions under the name UNITE. These trainings are available free of charge at INSERT URL HERE–COMING.
Scientific articles about UNITE and PAS can be accessed free of charge here:
https://pmc.ncbi.nlm.nih.gov/articles/PMC5555805/ “Findings from a Couple-Based Open Trial for Adult Anorexia Nervosa”
https://pmc.ncbi.nlm.nih.gov/articles/PMC2889168/ “Uniting Couples (in the treatment of Anorexia Nervosa (UCAN)”
https://pmc.ncbi.nlm.nih.gov/articles/PMC4342417/ “Partner distress in the context of adult anorexia nervosa: The role of patients’ perceived negative consequences of AN and partner behaviors”
https://pmc.ncbi.nlm.nih.gov/articles/PMC5378591/ “Disorder-specific patterns of emotion coregulation in couples: Comparing obsessive compulsive disorder and anorexia nervosa”
https://pmc.ncbi.nlm.nih.gov/articles/PMC8380698/ “Promoviendo una Alimentación Saludable (PAS) Results: Engaging Latino families in eating disorder treatment”
https://pmc.ncbi.nlm.nih.gov/articles/PMC3640683/ “Promoviendo una Alimentación Saludable (PAS) Design and methods: Engaging Latino families in eating disorder treatment”
ARFID Genes and Environment (ARFID-GEN)
ARFID-GEN was a research study for individuals aged 18 or older or parents of children (aged 7-17) who currently have avoidant/restrictive food intake disorder (ARFID) (previously known as selective eating disorder or extreme picky eating). This was the first (and largest) study ever designed to identify genetic and environmental predictors of ARFID. Although ARFID-GEN is not enrolling participants, individuals who are 18 years or older who have had ARFID at any time in their life are welcome to enroll in EDGI2!
Scientific articles about ARFID-GEN and other ARFID studies by CEED investigators and their colleagues around the world
https://pubmed.ncbi.nlm.nih.gov/37990202/ “ARFID Genes and Environment (ARFID-GEN): study protocol”
https://pubmed.ncbi.nlm.nih.gov/39115175/ “Assessing Avoidant/Restrictive Food Intake Disorder (ARFID) symptoms using the Nine Item ARFID Screen in >9000 Swedish adults with and without eating disorders” (Open access report coming soon)
https://pmc.ncbi.nlm.nih.gov/articles/PMC10629104/ “Avoidant/restrictive food intake disorder (ARFID) in New Zealand and Australia: a scoping review”
https://pmc.ncbi.nlm.nih.gov/articles/PMC9978946/ “Etiology of the Broad Avoidant Restrictive Food Intake Disorder Phenotype in Swedish Twins Aged 6 to 12 Years”