Department of Economics and Business Economics

The anorexia nervosa genetics initiative (ANGI): Overview and methods

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  • Laura M Thornton, Department of Nutrition, University of North Carolina, Chapel Hill, North Carolina 27599, USA.
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  • Melissa A Munn-Chernoff, Department of Nutrition, University of North Carolina, Chapel Hill, North Carolina 27599, USA.
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  • Jessica H Baker, Department of Nutrition, University of North Carolina, Chapel Hill, North Carolina 27599, USA.
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  • Anders Juréus, Department of Medical Epidemiology and Biostatistics, Karolinska Institutet, PO Box 281, Stockholm SE-171 77, Sweden.
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  • Richard Parker, Royal Brisbane Hospital QLD, QIMR Berghofer Medical Research Institute, Locked Bag 2000, 4029, Australia.
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  • Anjali K Henders, Queensland Brain Institute, The University of Queensland, Brisbane, QLD, 4072, Australia.
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  • Janne T Larsen
  • Liselotte Petersen
  • Hunna J Watson, University of North Carolina at Chapel Hill, Chapel Hill, NC 27599, USA; The University of Western Australia, 35 Stirling Highway, Perth, WA 6009, Australia; Curtin University, GPO Box U1987, Perth, WA 6845, Australia.
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  • Zeynep Yilmaz, Department of Nutrition, University of North Carolina, Chapel Hill, North Carolina 27599, USA.
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  • Katherine M Kirk, Royal Brisbane Hospital QLD, QIMR Berghofer Medical Research Institute, Locked Bag 2000, 4029, Australia.
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  • Scott Gordon, Royal Brisbane Hospital QLD, QIMR Berghofer Medical Research Institute, Locked Bag 2000, 4029, Australia.
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  • Virpi M Leppä, Department of Medical Epidemiology and Biostatistics, Karolinska Institutet, PO Box 281, Stockholm SE-171 77, Sweden.
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  • Felicity C Martin, Royal Brisbane Hospital QLD, QIMR Berghofer Medical Research Institute, Locked Bag 2000, 4029, Australia.
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  • David C Whiteman, Royal Brisbane Hospital QLD, QIMR Berghofer Medical Research Institute, Locked Bag 2000, 4029, Australia.
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  • Catherine M Olsen, Royal Brisbane Hospital QLD, QIMR Berghofer Medical Research Institute, Locked Bag 2000, 4029, Australia.
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  • Thomas M Werge, iPSYCH, The Lundbeck Foundation Initiative for Integrative Psychiatric Research, Bartholin Alle 6, Aarhus 8000, Denmark; Mental Health Services, Institute for Biological Psychiatry, MHC Sct. Hans, Kristineberg 3, Copenhagen 2100, Denmark; University of Copenhagen, Nørregade 10, Copenhagen DK-1165, Denmark.
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  • Nancy L Pedersen, Department of Medical Epidemiology and Biostatistics, Karolinska Institutet, PO Box 281, Stockholm SE-171 77, Sweden.
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  • Walter Kaye, Department of Chemistry and Biochemistry, University of California-San Diego, 9500 Gilman Drive, La Jolla, CA 92093-0378, USA.
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  • Andrew W Bergen, Biorealm Research, 6101 W Centinela Ave # 270, Culver, CA 90230, USA; Oregon Research Institute, Eugene, OR 97403, USA.
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  • Katherine A Halmi, Weill Cornell Medical College, 1300 York Avenue, New York, NY 10065, USA.
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  • Michael Strober, Department of Physics & Astronomy, University of California Los Angeles, Los Angeles, CA 90095, USA
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  • Allan S Kaplan, University of Toronto, 27 King's College Circle, Toronto, ON M5S 1A1, Canada.
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  • D Blake Woodside, University of Toronto, 27 King's College Circle, Toronto, ON M5S 1A1, Canada; Toronto General Hospital, 200 Elizabeth Street, Toronto, ON M5G 2C4, Canada.
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  • James Mitchell, Neuropsychiatric Research Institute, 120 8th Street South, Fargo, ND 58103, USA.
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  • Craig L Johnson, Eating Recovery Center, 7351 E. Lowry Blvd., Suite 200, Denver, CO 80230, USA.
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  • Harry Brandt, The Center for Eating Disorders at Sheppard Pratt, 6501 N. Charles Street, Baltimore, MD 21204, USA.
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  • Steven Crawford, The Center for Eating Disorders at Sheppard Pratt, 6501 N. Charles Street, Baltimore, MD 21204, USA.
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  • L John Horwood, Christchurch School of Medicine & Health Sciences, University of Otago, 2 Riccarton Avenue, PO Box 4345, Christchurch 8140, New Zealand.
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  • Joseph M Boden, Christchurch School of Medicine & Health Sciences, University of Otago, 2 Riccarton Avenue, PO Box 4345, Christchurch 8140, New Zealand.
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  • John F Pearson, Christchurch School of Medicine & Health Sciences, University of Otago, 2 Riccarton Avenue, PO Box 4345, Christchurch 8140, New Zealand.
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  • Laramie E Duncan, Stanford University, 450 Serra Mall, Stanford, CA 94305-2004, USA.
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  • Jakob Grove
  • Manuel Mattheisen
  • Jennifer Jordan, Christchurch School of Medicine & Health Sciences, University of Otago, 2 Riccarton Avenue, PO Box 4345, Christchurch 8140, New Zealand.
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  • Martin A Kennedy, Christchurch School of Medicine & Health Sciences, University of Otago, 2 Riccarton Avenue, PO Box 4345, Christchurch 8140, New Zealand.
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  • Andreas Birgegård, Department of Medical Epidemiology and Biostatistics, Karolinska Institutet, PO Box 281, Stockholm SE-171 77, Sweden; Stockholm Health Care Services, County Council, Box 45436, Stockholm 104 31, Sweden.
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  • Paul Lichtenstein, Department of Medical Epidemiology and Biostatistics, Karolinska Institutet, PO Box 281, Stockholm SE-171 77, Sweden.
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  • Claes Norring, Department of Medical Epidemiology and Biostatistics, Karolinska Institutet, PO Box 281, Stockholm SE-171 77, Sweden; Stockholm Health Care Services, County Council, Box 45436, Stockholm 104 31, Sweden.
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  • Tracey D Wade, Flinders University, GPO Box 2100, Adelaide, South Australia 5001, Australia.
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  • Grant W Montgomery, Queensland Brain Institute, The University of Queensland, Brisbane, QLD, 4072, Australia.
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  • Nicholas G Martin, Royal Brisbane Hospital QLD, QIMR Berghofer Medical Research Institute, Locked Bag 2000, 4029, Australia.
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  • Mikael Landén, Department of Medical Epidemiology and Biostatistics, Karolinska Institutet, PO Box 281, Stockholm SE-171 77, Sweden; Gothenburg University, Box 100, Gothenburg SE-405 30, Sweden.
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  • Preben Bo Mortensen
  • Patrick F Sullivan, University of North Carolina at Chapel Hill, Chapel Hill, NC 27599, USA; Department of Medical Epidemiology and Biostatistics, Karolinska Institutet, PO Box 281, Stockholm SE-171 77, Sweden.
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  • Cynthia M Bulik, University of North Carolina at Chapel Hill, Chapel Hill, NC 27599, USA; Department of Medical Epidemiology and Biostatistics, Karolinska Institutet, PO Box 281, Stockholm SE-171 77, Sweden. Electronic address: cbulik@med.unc.edu.

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 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 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
JournalContemporary Clinical Trials
Volume74
Pages (from-to)61-69
ISSN1551-7144
DOIs
Publication statusPublished - 2018

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