Preprint open access publication

The Anorexia Nervosa Genetics Initiative: Overview and Methods

bioRxiv, Cold Spring Harbor Laboratory,


DOI:10.1101/234013, Dimensions: pub.1099722861,



  1. (1) University of North Carolina at Chapel Hill, grid.10698.36
  2. (2) Karolinska Institute, grid.4714.6
  3. (3) QIMR Berghofer Medical Research Institute, grid.1049.c
  4. (4) University of Queensland, grid.1003.2
  5. (5) Aarhus University, grid.7048.b, AU
  6. (6) Curtin University, grid.1032.0
  7. (7) University of Western Australia, grid.1012.2
  8. (8) Institute for Biological Psychiatry, MHC Sct. Hans, Mental Health Services Copenhagen, Denmark
  9. (9) Lundbeck Foundation, grid.452548.a
  10. (10) University of Copenhagen, grid.5254.6, KU
  11. (11) University of California, San Diego, grid.266100.3
  12. (12) Biorealm Research, Culver City, CA, USA
  13. (13) Cornell University, grid.5386.8
  14. (14) University of California, Los Angeles, grid.19006.3e
  15. (15) University of Toronto, grid.17063.33
  16. (16) Toronto General Hospital, grid.417184.f
  17. (17) University of North Dakota, grid.266862.e
  18. (18) Eating Recovery Center, Denver, CO, USA
  19. (19) Sheppard and Enoch Pratt Hospital, grid.415690.f
  20. (20) University of Otago, grid.29980.3a
  21. (21) Stanford University, grid.168010.e
  22. (22) University of Würzburg, grid.8379.5
  23. (23) Stockholm Health Care Services, grid.467087.a
  24. (24) Flinders University, grid.1014.4
  25. (25) University of Gothenburg, grid.8761.8


Abstract Background: Genetic factors contribute to anorexia nervosa (AN); and the first genome-wide significant locus has been identified. We describe methods and procedures for the Anorexia Nervosa Genetics Initiative (ANGI), an international collaboration designed to rapidly recruit 13000 individuals with AN as well as ancestrally matched controls. We present sample characteristics and the utility of an online eating disorder diagnostic questionnaire suitable for large-scale genetic and population research. Methods: ANGI recruited from the United States (US), Australia/New Zealand (ANZ), Sweden (SE), and Denmark (DK). Recruitment was via national registers (SE, DK); treatment centers (US, ANZ, SE, DK); and social and traditional media (US, ANZ, SE). All cases had a lifetime AN diagnosis based on DSM-IV or ICD-10 criteria (excluding amenorrhea). Recruited controls had no lifetime history of disordered eating behaviors. To assess the positive and negative predictive validity of the online eating disorder questionnaire (ED100K-v1), 109 women also completed the Structured Clinical Interview for DSM-IV (SCID), Module H. Results: Blood samples and clinical information were collected from 13,364 individuals with lifetime AN and from controls. Online diagnostic phenotyping was effective and efficient; the validity of the questionnaire was acceptable. Conclusions: Our multipronged recruitment approach was highly effective for rapid recruitment and can be used as a model for efforts by other groups. High online presence of individuals with AN rendered the Internet/social media a remarkably effective recruitment tool in some countries. ANGI has substantially augmented Psychiatric Genomics Consortium AN sample collection. ANGI is a registered clinical trial: NCT01916538 ; .


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