US researchers seeking 6,000+ participants for world’s largest eating disorders genetics study

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.   

American 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.

Americans wishing to volunteer for, or learn more about EDGI, can visit www.edgi.org, email EDGI@unc.edu or call (984) 974-3798.

In Australia, volunteers need to be aged 13 years or over and have currently, or at any point in their lives experienced, anorexia nervosa, bulimia nervosa or binge eating disorder.

Australians wishing to learn more, or to register for the study, can visit www.edgi.org.au or emailedgi@qimrberghofer.edu.au.

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

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.

 References

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