NATIONAL MEDIA RELEASE
TUESDAY, OCTOBER 13, 2020
FOR IMMEDIATE USE
US researchers seeking 6,000+ participants for
world’s largest eating disorders genetics study
Study to pinpoint genes influencing risk of developing eating disorders
University of North Carolina (UNC) researchers are seeking more than 6,000 participants aged 18 years and over, with first-hand experience of eating disorders to enroll in the world’s largest ever genetic research study into three complex, devastating mental illnesses.
The ground-breaking Eating Disorders Genetics Initiative (EDGI) aims to identify the hundreds of genes that influence a person’s risk of developing anorexia nervosa, bulimia nervosa, and binge-eating disorder,
to improve treatment, and ultimately save lives.
According to recent survey results evaluating the impact of COVID-19 on Americans living with eating disorders performed by EDGI Principal Investigator, Distinguished Professor of Eating Disorders, Department of Psychiatry, School of Medicine, UNC, Professor Cynthia Bulik and her research team, support for those with eating disorders is more crucial than ever, given two-in-three survey respondents expressed concerns about their mental well-being.1
“Individuals with current, or past experience of an eating disorder face unique risks due to the current pandemic.1 While COVID-19 related factors, including the effects of quarantining, lack of clear information, and fear of infection, will influence the broader community’s mental health,2 they are likely to further impact those battling pre-existing mental illnesses, such as eating disorders.3,4
“Our new data show that over two-thirds are worried about the impact of the pandemic on their mental health – even more than are worried about the impact of COVID-19 on their physical health
(46 percent),”1 said Prof Bulik.
EDGI is funded by the National Institute of Mental Health and follows the ground-breaking advances made recently through the collaborative Anorexia Nervosa Genetics Initiative (ANGI), which revealed both psychiatric and metabolic origins of anorexia nervosa, explaining why people living with the disorder struggle to gain weight, despite their best efforts. The study further identified eight regions on the genome significantly associated with the illness.5
“Our new study, EDGI, offers us a unique opportunity to further investigate the complex interplay of
genetic and environmental factors that contribute to eating disorders, in order to improve diagnosis, management and treatment – an endeavor that is evidently even more critical during the current pandemic,” Prof Bulik said.
Eating disorders are complex mental illnesses that for some, can lead to severe and permanent physical complications, and even death.6,7 While various studies have explored one’s genetic predisposition to developing an eating disorder, only a handful of the responsible genes have been identified to date, leaving many more to be found.
“We are inviting all Americans, aged 18 and over, with first-hand experience of an eating disorder, to participate in this important genetics study,” said Prof Bulik.
Participants need to be aged 18 years and over and have currently, or at any point in their lives experienced anorexia nervosa, bulimia nervosa or binge-eating disorder.
According to Assistant Professor, Division of Psychiatric Genomics, Icahn School of Medicine, Dr Laura Huckins, New York, findings from family and twin studies indicate eating disorders are heritable.8
“To further these studies, EDGI researchers will analyze participant saliva samples to point toward specific genes associated with eating disorders. DNA will be extracted from the saliva samples and genotyped to provide a read out of each participant’s genetic code.”
“Genetic variants will then be tested statistically for association with eating disorders, by comparing the genomes of large numbers of individuals with eating disorders, to large numbers of individuals without the illnesses,”9,10 A/Prof Huckins said.
Nearly half of all individuals with eating disorders experience other mental health conditions at some point during their lives.11 Therefore, by comparing the EDGI samples with samples from individuals with other disorders will also help the researchers to understand the genetic relationship among eating disorders and commonly co-occurring conditions, such as depression, anxiety disorders, substance use problems, as well as other medical illnesses including metabolic conditions.12,13
According to author, founder and Executive Director, Families Empowered And Supporting Treatment for Eating Disorders (F.E.A.S.T), Ms Laura Collins Lyster-Mensh, Virginia, eating disorders are not a choice, but rather, are biologically-influenced medical illnesses14 that can cause significant distress, and affect the lives of individuals, their families, carers, partners, and friends.15
“Eating disorders are recognized as a significant public health concern,16 which appear to be on the rise, noting the average prevalence of eating disorders has more than doubled since 2000.16 Concerningly, eating disorders have one of the highest mortality rates of any mental illness.17
“People of all genders, ages, body sizes, races, ethnicities, and socioeconomic backgrounds can be affected by an eating disorder. Those with an eating disorder may also appear to be healthy, yet be extremely ill,”14 said Ms Collins Lyster-Mensh.
Yoga teacher, writer and mental health advocate, Maris Degener, 22, California, who battled anxiety and an eating disorder during her youth, constantly felt compelled to chase perfection and control, with no end in sight.
Her parents eventually discovered she was self-harming and purging her food, and following a subsequent doctor visit, learned she had also been starving herself.
“After spending much of my young life struggling with mental illness, I hit breaking point when I was hospitalized with an eating disorder during my freshman year.
“I was a slave to the demands of my eating disorder, which allowed no room for flexibility, freedom, or intuition,” Ms Degener said.
A year later, at 16 years of age, Ms Degener began practicing yoga to manage her life-threatening illness. She has since become a role model for women of all ages, through her wellness blog, workshops and mentoring program.
Ms Degener is also a strong advocate for EDGI.
“Learning more about the genes involved in the development of eating disorders should open the door to more effective prevention, diagnosis and treatment, while hopefully challenging common misconceptions of the potentially devastating mental illnesses,” said Ms Degener.
Should you suspect that you, or a loved one, may be living with an eating disorder, speak to your local healthcare professional without delay. US patient support services offering helpline services include:
National Eating Disorder Association – Call (800) 931-2237, Crisis text 741741
National Association of Anorexia Nervosa (ANAD) – Call (630) 577-1330.
To volunteer for, or learn more about EDGI, head to , email or
call (984) 974- 3798.
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Termorshuizen JD, Watson HJ, Thornton LM, Borg S, Flatt RE, MacDermod CM, et al. Early impact of COVID-19 on individuals with self-reported eating disorders: A survey of ~1,000 individuals in the United States and the Netherlands. Int J Eat Disord. 2020. ul 28. doi: 10.1002/eat.23353.
Holingue, C., et al., Mental distress during the COVID-19 pandemic among US adults without a pre-existing mental health condition: Findings from American trend panel survey. Prev Med, 2020. 139: p. 106231.
Kaufman, K.R., et al., A global needs assessment in times of a global crisis: world psychiatry response to the COVID-19 pandemic. BJPsych Open, 2020. 6(3): p. e48-e48.
Rodgers, R.F., et al., The impact of the COVID-19 pandemic on eating disorder risk and symptoms. Int J Eat Disord, 2020. 53(7): p. 1166-1170.
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National Institute of Mental Health. Eating Disorders: About More Than Food. 2018. [Aug, 2020]; Available from: https://www.nimh.nih.gov/health/publications/eating-disorders/index.shtml.
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Bulik, C.M., L. Blake, and J. Austin, Genetics of Eating Disorders: What the Clinician Needs to Know. Psychiatr Clin North Am, 2019. 42(1): p. 59-73.
Dunn, E.C., et al., Genetic determinants of depression: recent findings and future directions. Harv Rev Psychiatry, 2015. 23(1): p. 1-18.
Samnaliev, M., et al., The economic burden of eating disorders and related mental health comorbidities: An exploratory analysis using the U.S. Medical Expenditures Panel Survey. Prev Med Report, 2015. 2: p. 32-34.
Hudson, J.I., et al., The prevalence and correlates of eating disorders in the National Comorbidity Survey Replication. Biol Psychiatry, 2007. 61(3): p. 348-358.
Jordan, J., et al., Specific and nonspecific comorbidity in anorexia nervosa. Int J Eat Disord, 2008. 41(1): p. 47-56.
Schaumberg, K., et al., The Science Behind the Academy for Eating Disorders' Nine Truths About Eating Disorders. Eur Eat Disord Rev, 2017. 25(6): p. 432-450.
Deloitte, Social and economic cost of eating disorders in the United States of America. 2020.
Galmiche, M., et al., Prevalence of eating disorders over the 2000–2018 period: a systematic literature review. Am J Clin Nutr, 2019. 109(5): p. 1402-1413.
Smink, F.R.E., D. van Hoeken, and H.W. Hoek, Epidemiology of eating disorders: incidence, prevalence and mortality rates. Curr Psychiatry Reports, 2012. 14(4): p. 406-414.