The Anorexia Nervosa Genetics Initiative (ANGI): Overview and methods

Laura M. Thornton, Melissa A. Munn-Chernoff, Jessica H. Baker, Anders Juréus, Richard Parker, Anjali K. Henders, Janne T. Larsen, Liselotte Petersen, Hunna J. Watson, Zeynep Yilmaz, Katherine M. Kirk, Scott Gordon, Virpi M. Leppä, Felicity C. Martin, David C. Whiteman, Catherine M. Olsen, Thomas M. Werge, Nancy L. Pedersen, Walter Kaye, Andrew W. BergenKatherine A. Halmi, Michael Strober, Allan S. Kaplan, D. Blake Woodside, James Mitchell, Craig L. Johnson, Harry Brandt, Steven Crawford, L. John Horwood, Joseph M. Boden, John F. Pearson, Laramie E. Duncan, Jakob Grove, Manuel Mattheisen, Jennifer Jordan, Martin A. Kennedy, Andreas Birgegård, Paul Lichtenstein, Claes Norring, Tracey D. Wade, Grant W. Montgomery, Nicholas G. Martin, Mikael Landén, Preben Bo Mortensen, Patrick F. Sullivan, Cynthia M. Bulik

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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 13,000 individuals with AN and 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 13,363 individuals with lifetime AN and from controls. Online diagnostic phenotyping was effective and efficient; the validity of the questionnaire was acceptable. Conclusions: Our multi-pronged 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: clinicaltrials.govNCT01916538; https://clinicaltrials.gov/ct2/show/NCT01916538?cond=Anorexia+Nervosa&draw=1&rank=3.

Original languageEnglish
Pages (from-to)61-69
Number of pages9
JournalContemporary Clinical Trials
Volume74
DOIs
Publication statusPublished - 1 Nov 2018

Bibliographical note

Submitted manuscript made available in accordance with publishers policy. Copyright retained by author(s).

Keywords

  • Anorexia nervosa
  • Eating disorders
  • Genome-wide association
  • Psychiatric genetics
  • Psychiatric genomics consortium
  • Social media

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    Thornton, L. M., Munn-Chernoff, M. A., Baker, J. H., Juréus, A., Parker, R., Henders, A. K., Larsen, J. T., Petersen, L., Watson, H. J., Yilmaz, Z., Kirk, K. M., Gordon, S., Leppä, V. M., Martin, F. C., Whiteman, D. C., Olsen, C. M., Werge, T. M., Pedersen, N. L., Kaye, W., ... Bulik, C. M. (2018). The Anorexia Nervosa Genetics Initiative (ANGI): Overview and methods. Contemporary Clinical Trials, 74, 61-69. https://doi.org/10.1016/j.cct.2018.09.015